Words from one of my FB groups

This came from one of the groups I'm in. I asked her permission to share this as part of my mission to challenge the pink, fluffy and sexy breast cancer messaging. MBC=metastatic breast cancer

"You know it's MBC when
- when you never shed a tear about a mastectomy because you were on a mission to see "stable"
- when you requested to have surgically induced menopause at 38
- when you wave off the nurse's question: "are you suffering from hot flashes, fatigue and joint pain" with "Yes, yes and yes, least of my concerns, next"
- when breast cancer month/ runs don't mention your disease because you represent the antithesis to their hope
- when you're working on legacy stuff for your now small children
- when death announcements are a regular part of your online support groups
- when oncos try to ground you in stats and realities rather than hope and positive thinking
- when your treatment side effects are now more toxic than the stability because the meds were never meant to be taken long term
- when you live caught between acceptance and hope
- when you've been medically retired at 41, just when your career was launching
- when your 5 year old daughter asks you, before she leaves for school, if "tonight can you not be resting after school?"
-when your stomach lurches everytime someone mentions the far off future

There are so many more. I think MBC is a different disease and I've always felt like an outsider among "cancer warriors!" "

She also said imagine your oncologist saying they don't want to change your meds until the cancer grows more so they don't run out of treatment options. Thankfully I have not gotten that.

 

[JayneWonders]

Thanks for this information, Northwind.

 

[Mystic]

A needed cautionary response to those who pride themselves in their capacity for accurate empathy--and an indictment against the glib use of the words, "I know how you feel."

 

[Northwind]

Exactly Mystic. I know someone who had an early stage breast cancer. She had surgery. She didn't have chemo. She might have had radiation. It wasn't a walk in the park for her. She says she understands my experience. She doesn't. I know she means well. She just doesn't understand. I mean how could anyone understand when they haven't experienced it.

 

[Luce NDs]

Yet greater powers feel the urge to mule on with this expression! From which we get the expression: "there's a mule among us" and none felt the kick start for empathy! So it went as the powers wished it to go ... how Cupid lost Psyche ...

One has to know their myths ... what's "th"? The initiation of thick and dense ... concretely stoned as it just will not move ... stoed? In Norwegian tongues that may be an enger that is a "field" ... in English a "tight" thing ... tis an auld word ... Bourn out of the past! Maybe a tilde ah ... as the thing rocks ...

The things we have to deal with ...

 

[Waterfall]

Exactly Mystic. I know someone who had an early stage breast cancer. She had surgery. She didn't have chemo. She might have had radiation. It wasn't a walk in the park for her. She says she understands my experience. She doesn't. I know she means well. She just doesn't understand. I mean how could anyone understand when they haven't experienced it.

I'm curious, and please don't take this wrong (just trying to understand)...does someone have to have the same experience in order to understand?

 

[Northwind]

I'm curious, and please don't take this wrong (just trying to understand)...does someone have to have the same experience in order to understand?

I'm not sure it's possible to fully understand what it is like to go through this particular process unless a person has experienced it. How would anyone be able to actually understand what it's like to get scans (nuclear bone and CT, maybe PET) every three or four months, to be given strong drugs that cause significant side effects, wondering if the disease is stable, etc unless they've experienced it?

Another person can have empathy and can hope to understand. I don't think it is possible to actually understand unless it's experienced.

 

[Waterfall]

I'm not sure it's possible to fully understand what it is like to go through this particular process unless a person has experienced it. How would anyone be able to actually understand what it's like to get scans (nuclear bone and CT, maybe PET) every three or four months, to be given strong drugs that cause significant side effects, wondering if the disease is stable, etc unless they've experienced it?

Another person can have empathy and can hope to understand. I don't think it is possible to actually understand unless it's experienced.

I appreciate you answering thanks.

 

[Waterfall]

Today I was listening to a young woman on the CBC describing her journey with cancer and the surprising costs that came out of pocket and the lack of resources for healthcare. Her mother and sister had to take time from work to care for her, she no longer worked, so money was scarce and often had to choose between living expenses and health expenses. Basically she was saying she needed help and couldn't always take care of herself.
At the end of the interview, the host, not realizing what he was saying I'm sure, politely said, Thank you for coming and "Take Care of Yourself"

 

[Northwind]

I heard a clip of that. There can be additional costs. Thankfully mine haven't been horrible. The medication protocol I'm in involves an injectable medication. Because the protocol is paid by the drug company, the injection isn't covered by the province. If I went to their clinic in this city, I'd have to pay $80 per visit. Alternatively, I could drive about two hours to the next city to get it injected free. The first month involved three visits. Thankfully my GP clinic has a nurse and I can get it done there.

I probably don't have access to some drugs because I don't have a drug plan and can't pay several thousand dollars per month for those drugs.

At the end of the interview, the host, not realizing what he was saying I'm sure, politely said, Thank you for coming and "Take Care of Yourself"

I do think people mean well when they say these dumb things. Hopefully the host realized that statement was dumb and will respond differently next time.