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Jan 14, 2022 01:16PM
LOVE this thread. it is such a personal decision who to tell, how to get support etc. There is no right or wrong answer.
The first time around, I wanted to keep it secret but my husband, who ran a public cultural institution, felt obligated to tell his board (God knows why...) That turned out to be amusing as all the old fogies immediately felt a bond with me and came up at events to chat about health issues. My daughter, then age 9, told all of her friends at school, so I had nosy PTA moms sidling up to me at school events saying things like "What KIND of cancer IS IT???" To one I said, "I thought no one knew..." to which she responded,"Everyone knows... it's the elephant in the room..." then gestured out over a room full of women swilling Chardonnay and gossiping as they supervised a square dance. (Note--no one sent the elephant flowers or casseroles...)
That go round, I was thrown into a severe clinical depression brought on by chemo induced early menopause and Tamoxifen. I am normally pretty positive and strong, so this was really rough, especially as I felt my doctors dismissed me when I said I thought it was the meds. My oncologist prescribed antidepressants saying "Lots of successful women take them..". I am not diminishing antidepressants, they are lifesaving in many cases...but my belief--and experience, is they are very strong medicine that impacts brain chemistry, so need to be administered mindfully, alongside therapy and determination of what is causing the mood issues, not handed out like tic tacs.
Interestingly, my current oncologist said that up to 10% of women experience severe depression on Tamoxifen. I felt so vindicated when he said that. As if a weight lifted all these years later. If someone had told me that back then, I might have had an easier time as I would have known definitively that it wasn't "me" that was crazy, it was my body and mIind reacting to a medication...I try to get that message out now as I see women on these boards questioning why they feel so down... Cancer is inherently depressing, of course, but so is inflammation, a lot of the medications we're prescribed etc. The combination of things that may lead to clinical depression in cancer patients needs to be discussed and unpicked a lot more I believe. I sometimes wonder if the way I--and other women, are not taken seriously when discussing mental health side effects is a long term result of women being labeled as "weak" and "prone to hysteria" Just a thought...
Fast forward a decade, Stage IV. I swore my husband to secrecy and said I would tell who I want when I want. This time he respected my desire. I told my daughter, so her college friends all know--some things never change... but otherwise I pick and chose who to tell. I am 2.5 years in, doing well, and outwardly seem fine, so I mostly keep it to myself. My British in-laws don't know--they are old and don't need the worry. Some of my barn mates where I ride know--horse people are tough and not prone to fussing which is bliss. My 3 best friends from high school don't know, and will probably be furious when they find out, but a few newer friends do--chosen for their discretion.
When I sit quietly and think about why i don't talk about it, I think the root is denial. The less I talk about it, the more I can spend this time while my quality of life remains intact feeling "normal". It's as if by telling people, or talking about it, I give the Cancer the undeserved power and privilege of an identity. Does that make sense? I know logically that whether I tell people or not, things will play out as it will...but it is how I feel comfortable right now.
Now, of course, not talking isn't a great way to build a support system. And terminal cancer is a profoundly lonely journey. I saw a therapist after my stage I diagnosis, during the worst of my depression, and it wasn't that helpful so I haven't done that. I am active in my church, and that helps. I did a silent meditation retreat a few years ago and want to do that again as it was profoundly helpful. I exercise--VERY helpful.
My husband listens and cares, but is not overly engaged in the minutiae. I complain that it bothers me he isn't more in the weeds, then find myself snapping at him when he asks more than two or three questions.... My adult kids are sweet, but are in their own denial and are just launching their lives, so I don't want them preoccupied with me. Instead I am focusing on being together as much as possible--not "making memories" in any sort of contrived way, but having good talks and enjoying shared interests. I am blessed that after rough adolescences, they have become pleasant adults for the most part.
So for day to ay support, I find these online forums to be incredibly helpful--here and a few others I participate in. I learn a tremendous amount, and it is good to be in a space where we're all on similar journeys. I also like that I can read posts, or not...respond, or not... These days, after a bit of progression from bone only to liver, I am protecting what I fill my head with, so other than practical, actionable posts about managing side effects and treatment for liver mets, I tend to focus on upbeat things--long term survival. good scans. ideas for clinical trials etc.
Every so often I try to get practical with myself and think "I need to sit and face my fear of death." Then I think "nah, maybe not" and google "20 year MBC survivor story" ...
On the other hand, I notice when I hear about people who are five years out from an MBC diagnosis I think "wow, five years is a LONG TIME" Then I realize I am only 58, so if it wasn't for MBC, I would be looking at perhaps 30 more years of useful life. Oh well... Not projecting out too many years (or months even) into the future has become a "new normal." I am used to it now, but sometimes wish I had the luxury of thinking I'm immortal.
My belief, at least right now, is I am strong so will be able to handle things as they come, not a moment sooner. I don't want to look back and feel like I squandered a minute of this liminal moment between reasonable health and descent into proper illness.
Long post, all about me, but there you have it...P
2010 stage 1 Lumpectomy, radiation and Chemo