STFU

So I’ve been attempting to write post after post after post, inevitably trashing them all. I tried one on depression, one on anxiety, one on pink. Whatever I tried it just never worked. And I have to say that through it all I learned one thing: I’m sick of this shit.

I thought it was writer’s block, but it wasn’t. I realized that I was sick of writing about my breast cancer. The crises–at least the two I experienced thus far–are over. I’ve bitched and praised doctors. I’m certainly not surprised anymore. I’m smack in the middle of chronic maintenance. And how boring is that.

It’s cancer. I like boring. But what can I say that I haven’t said a hundred times? My latest scans are stable, except that my primary tumor is growing again. But a post about my primary tumor is boring because I don’t know why that–and nothing else–is growing. I’m not experiencing any awful side effects of my medications. In fact, I’ve cut back and take Oxycontin only once a day, and I’d like to bring down the dose of the Lyrica. Exemestane and me are still buddies for the time being. See? All good, but boring.

Then October. I don’t give a shit. Well, until a woman with hair was told not to attend a segment of the TODAY show because she had hair. That got my pantyhose in a bunch and the producers at TODAY were schooled with some serious social media organization. Now that’s been resolved. MBC seems to be making the rounds of the talk shows, and I think I’ve played one of many parts in changing that conversation. (Mind you, I say “one of many,” because so many were digging that path long before I came in with my shovel.)

Last week, after a miserable two weeks with some malicious and tenacious virus that had me on my ass, I developed crippling anxiety. I didn’t want to leave my apartment–and I didn’t. I cried, I felt helpless and alone, and I didn’t move. I was afraid of something. I didn’t want to bug my friends and whine. Then I asked one of my friends if she would pick up some milk and yogurt for me. When she arrived she read me the riot act. “Get the hell out of this apartment and get back to work!” She even bought me a small milk and one yogurt so it wouldn’t last and I’d have to go out.

I was grateful. She was right. How did I go from strong woman to whiney bitch? I was terrified to leave my apartment. “Stop reading those damned cancer blogs and get the hell out of here!”

I spoke to two other friends over the weekend and then the fog started to clear: I was caught in a cancer loop. When some Komen shill on Beyond the Pink Moon (Facebook) started to talk about “cure rates” in defense of Komen’s efforts, I knew I had to get out of this loop. For the cancer loop was becoming more toxic than the cancer itself. “Cure rates?” Fuck you! (Sure, bring on the hate mail. It’s still fuck you.)

I pulled out of every cancer group on Facebook. I even pulled out of the Knitting group; those moderators were nuttier than fruitcakes. Who needed to join a group with a bunch of shrews who deleted your post because you were “off topic” (whatever the fuck that meant). A bunch of dummies drunk on the nectar of being Facebook group moderators. All of this instantly stopped the noise. There is reason in silence; there is no reason in noise.

internetNoise like people who post to a FB group afraid that their port has shifted because of a bulge in their neck and then ask, “What do you think I should do?” What the fuck do we know? Go to the fucking emergency room! What the fuck? Or the “surround yourself with positive people and your positive thoughts will make you happy and then, in turn, make you well” people. Seriously? Go fuck yourself and the horse you rode in on. And all the goddamned ribbons and pink and bitching and moaning and whining (of which I was one). And all the noise about cannabis curing cancer. Let me tell you something, if that were true I should have never even developed cancer, if you get my meaning.

There is a time and place when we seek answers, camaraderie, and solace. But even in Cancertown there is a time where we stick a Poise pad on our panties, pull ’em way up, and move along. The cancer loop sparked and then fed my anxiety. I tried to find answers among the many posts that I scrolled through daily. Instead, I was finding nothing but a bunch of other people looking for answers where there were none. No one there was going to know why my tumor was growing and nothing else wasn’t–that’s why I have an oncologist who went to medical school, fer crissakes. What a dumbass!

On Monday I returned to work and I was pretty fragile. I had anxiety all day, but after dinner I was feeling considerably better. I was looking forward to Tuesday. I woke up, got my affairs in order, suited up, and headed out for the office.  I felt I had purpose again. I wasn’t going to go away quietly. And, best of all, I was out of that poisonous loop. No noise.

Thing is, this noise wasn’t replaced by “happy happy joy joy” noise. It was replaced with my life. Not that it’s exciting, by any stretch of the imagination, but it wasn’t fucking cancer 24/7.

Cancer is the one thing that we can’t escape. It’s in our bodies or in our minds all of the time. If you’re a “survivor,” you don’t know that your safe. And if you have MBC, you never know what the next scan will show. We have a lot of ways to deal with that: we have our friends, we have blogs and Facebook groups that can give us information and/or support, and then we have the choice to turn it off. Each of these has a time and place, and the road isn’t always smooth by any means. But if we start to dig a hole for ourselves with only one choice, we’re going to die down there. Alone and miserable. And isn’t having cancer bad enough?

 

 

 

 

 

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61 Responses to STFU

  1. melaniedc says:

    You are a fucking badass. Rock the fuck on, lady.

  2. Melanie says:

    You are a fucking badass. I found you through other BC friends, and damn. Rock the fuck on.

  3. Gina says:

    I know it sounds unlikely, but replace “breast cancer” with “ADHD” and I have experienced much the same that you describe in online “discourse.” You nailed it.

    • Scorchy says:

      The substance is so similar for our various maladies. I think because we’re all so ridiculously insane as human beings. When all of this crap goes down in person, I wish I could be like a cat and smack ’em down with my paw. BAM!

  4. Gina says:

    “A bunch of dummies drunk on the nectar of being Facebook group moderators.”

    LOL!!

    Love your spirit and wit!

  5. Ooooh yes, this resonates.

  6. I have felt this same anxiety this month. There is too much “awareness,” too much cancer, too much, too much, too much. And yet, I appreciate the collective noise we made because I DO think it’s making a difference in the MBC conversation. It’s a fine balance and you have to take the breaks that help you maintain your sanity and perspective. Glad things are boring for you right now, cancer-wise!

    • Scorchy says:

      You’re right, keeping that balance is challenging. It’s all part of learning how to live with the enhanced ambiguity. How I wish we didn’t have to. Be well, Jen. xoxo

  7. This is a perfect example of why I read your blog ~ your honesty astounds me as does your no nonsense approach to life. Keep smiling…keep caring…keeping being you! xoox

  8. Agree with everything but, for me, the absolute highlight was ‘Go fuck yourself and the horse you rode in on’. Colourful! Still laughing 10 minutes on. Can’t wait for the chance to use this expression myself. Why isn’t someone pissing me off so I can say it? Still, I’m sure I won’t have to wait long for some bastard to oblige.

  9. Amen sista! Always great to hear from you! I love your frank and honest take on it all. And that New Yorker keepin’ it real attitude. It’s so easy to get lost in ‘cancerworld’… And I’m sick of my life being all about cancer. There’s only a few MBC bloggers I follow and one Facebook group. I’d much rather spend my time having fun and focusing on living than caught up in the horrors and endless drama of this disease. So happy you’re back at work and out there living life!

  10. Glimpsejoy says:

    Oh my! Rock on, sister! At 5 years “out” I can still get trapped under the wave of what if and the voices of doubt in my own head are loud enough to drown–who needs outside voices that help it along? Life, for each moment, is all we have anyway–so glad to hear you go out and live it. You have incredible strength to push through the anxiety, questions, and pain and while you might think your journey, at this point, is boring; you have much to offer those on the same path. As well as that swift in the pants to all of us “living beyond” but really only ” treading water.” Thanks!

    • Scorchy says:

      Yeah, it’s hard enough living in three month increments of expectation. I don’t think this will be a breeze for I’ve have other experiences that led me to think “woo-hoo! I’m back! Yay!” and then just got nailed again. xoxo

  11. helensamia says:

    I did chuckle re the FB groups.. So true!! 😃

  12. Scorchy, understood! I think it will do you good to focus on other things besides cancer and tumors as much as it’s possible. It’s hard with all the noise drawing you back in. No answers, just an echo of your own anxiety and fears. I wish you lots of fun times with people who mean something to you. Enjoy your life because that’s the point. We all love and support you.

    • Scorchy says:

      xoxo Eileen!

      I think you may have singularly nailed it: an echo of my own fears and anxieties. In fact, yesterday I read a blog post that included some FB comments to support a particular point, and I could feel my anxiety level rising reading the comments. Had to get out fast. I am back at work –AFTER TWO YEARS–and I need to earn back the trust that I had from my colleagues.

  13. Dear Scorchy,

    Yer damned straight – take back your LIFE, woman!!! I love you.

    xoox, karen

  14. randiek says:

    Love love love … I found that myself Maybe selfish in some ways .. But I can’t be a good advocate if I’m not leading from EXAMPLE … Taking care of myself. If I spend all my time on my ass reading CANCER shit how can I enjoy whatever time might be in my bucket . I never wanted to be an expert on the subject and can only relate to what I’ve experienced. If I don’t do what’s good for ME it will drag me into depression. I hate FB for this reason what a waste of time I need to live in real time we don’t know how precious that is until we learn to live like we’re dying (skydiving)… And putting one foot out the door each day opens the opportunity to see real people for smiles and conversation.. I walk my dogs with a new purpose .. It’s for ME!! 🙂

    Sent from my iPhone

  15. Aurora Ayala says:

    Scorchy, wow, that’s all I can say, if you too get swamped by all of this what are we mere mortals to expect? I’ve only been blogging and doing the rounds in the facebook mbc and bc groups for a short period of time so maybe I haven’t quite reach that point yet but I definitely symphatize with the “boring” aspect of having “stable” disease. Not complaining, just boring. But I believe “our” experiences still need to be shared for those just entering the Fray, don’t you? Any way that’s my opinion but I respect yours. Congratulations on being able to go back to work, I do miss that, but I decided to retire and go on disability and it’s working for me. Thank you for sharing your opinions with us, and please don’t leave the Fray completely.
    Aurora

    • Scorchy says:

      I’m not going anywhere. But you are right, experienced folks need to be there to help those who are just beginning to deal with this crap. And I might be able to do that again, but for now I am going to have to take care of myself so that I CAN help others. I mean, I feel better when I can reach help and help. It’s one of the reasons this blog exists, so I don’t intend on leaving the blog. But I must leave the cancer loop just for the sake of my own health for the moment.

      I hate that you have mets and had to retire, but I hope your retirement is eventful and your mets is NOT! xoxo

  16. Bat freakin excrement! You said what i wanted to but better! My mother died of this miserable shit in 1991. Her 89th birthday will be October 25th, and I’ve been thinking of writing something, but instead i’m looking at baby goats, and foxes on trampolines. Baby goats are f*ing cute. So are hopping foxes.

    But yeah, anxiety – been there, done that before this breast batshit. I’m sorry you had to deal with it. It makes the world have jagged edges everywhere, there’s nowhere to rest. And the noise exacerbates the feeling of threat. But, I’m really glad you’re feeling better.

    ((((((<3))))) to you, Scorch. And thanks for your words.

    • Scorchy says:

      You make me laugh with those exclamations! Yes, nowhere to hide. That would be it. All of those groups were so helpful to me in different ways, but now I need to step back. I think I’ll go look at Pudding the Fox.

  17. Reesa Turner says:

    Remaining in some of these “support groups” can be difficult due to the sheer volume of deaths, and questionable behavior we encounter there. Some newbies don’t know shit and need someone to hold their hand and guide them. That is the main reason I will remain in some groups…it could mean support for them in the way of guidance for specific cancer protocols that their oncologists or surgeons may be reluctant or too ignorant to follow. THE NOISE, fer cripes sake, does become deafening!

    • Scorchy says:

      If I wasn’t single and perhaps had someone to lean on and break that noise, maybe I could persist. Because the blogs and groups are valuable–and I’ll peruse things that are open from time to time. After all, had I not been reading one of the groups (a good one–the closed mets group), I would have never known that so many women had been slighted by TODAY’s stupid producers. The groups are valuable. No question. I just couldn’t go on at this point in time, because I couldn’t function anymore. I’m no super woman, but so many people have it worse than me. I want to live for them. For me. I just need a break, man.

      Years ago my mom attended AlAnon meetings. She learned a lot and was active for some time. But then she said she had to break because it was bringing her down instead of lifting her up. And the biggest lesson she learned from AlAnon is that “you have to take care of yourself.” That is what she was doing, even though she still relied on that foundation of knowledge that she had learned. That’s how I feel right now. It’s bringing me down more than it is lifting me up. In that condition I can’t even help someone else.

      • Reesa Turner says:

        Yep, Scorchy…I take a break from it all when the din becomes tinnitus. Our individualized cancer groups often intertwine, and I do hope to never need to ask to join the closed mets group. I will continue to push for research dollars to be steered towards Metastatic disease and the orphaned rare cancers, like my own inflammatory breast cancer. It is ignorant how the TODAY show presented their PINK bubblegum baldy push. It is sad that triple negative cancer may actually get some interest ONLY NOW because Joan Lunden decided to open up about it. If we just keep plugging away, maybe some of this shit will stick.

      • Scorchy says:

        It really is maddening, isn’t it? The pinking of breast cancer has really created a culture of positivity and hope and smiles and sisterhood. Yeah, that should all be AN ASIDE. The focus needs to be on research for how and why these cancers develop, real treatments, and a real cure. But it’s all been inverted and people who are on the outside who see no harm in all of the pinking just don’t get it. It’s all about the disease and what is does to us and a cure. I could scream! Be well–and I don’t want you anywhere near this mets club!! xoxo

  18. Jeanette Millard says:

    Now THIS is a great post. THANK YOU!

    Jeanette Millard CJM Consulting millardjeanette@gmail.com 617-513-5123

  19. Dorry says:

    Well, that was great as usual. Thank you.
    And I agree, I do get your meaning.
    Love to you!

    • Scorchy says:

      You kind of need a cigarette after reading this one and I don’t even smoke. Cigarettes.

      • Dorry says:

        Well, I try to be through. So I researched until I found some useful information. But I had to sift through lots of crazy stuff. As usual.
        But, yeah, I had to smile and laugh when I read that part … because.
        So good to know you. xo Seriously.

  20. Sharon says:

    I love this post Scorchy! Well said. It mirrors exactly how I feel right now about my cancer and all the facebook groups! Thank you.

  21. The Accidental Amazon says:

    Can you hear me chortling over here?? Bahahahah!! Best thing I’ve read all week. Why do think I’ve scarcely written anything all year? I think a lot of us get to this point, and it’s HEALTHY! It’s a sign that we’re ready and able to patch up our lives, such as they may be, no matter what the hell is going on with our cancer. Christ, I’d just like to have a clean house again.

    There are those folks with cancer who seem inclined to make a career out of plowing the same furrows over and over again. Maybe they’re trying to work something out in themselves. Maybe they are trying to sell a book. A precious few have had career skills before they had cancer that lend themselves to combining their personal experiences with their professional expertise to engage in productive cancer patient advocacy. But you can’t smell any roses if you’re too immersed in your own shit.

    Love you. Kathi

  22. Lawson Brouse says:

    Thank-you for the post

  23. maesprose says:

    I know I wasn’t supposed to laugh but you had a number of good lines here… Nuttier than fruitcakes! Drunk on the nectar of being Facebook moderators! As usual you are on point. Keep writing as infrequently or about anything you like. I’ve always enjoyed your posts!

  24. You said it, sister. There is so much about cancer that incites a STFU response, and you nailed ’em. We can’t escape it, and Pinktober reminds us of the prison in which cancer puts us. Give a big hug to your friend who bitch-slapped you out of your funk; she proved that one yogurt and a small jug of milk are powerful weapons.
    P.S. The line “drunk on the nectar of being Facebook group moderators” made me laugh, for real.

    • Scorchy says:

      Who would’ve believed that milk and yogurt couldbe powerful motivators! My sister doesn’t get why I have these ribbons and all of this ta-ta and boobies shit. IT’S A PRISON. You captured it perfectly. It’s gone from awareness–which was needed–to a veritable prison that stops advances and keeps us chained to this crap. My mom calls it “stinkin’ thinkin’,” and she’s right! xoxo

  25. alison68 says:

    I like this, just what I have been going through. I had some counselling last week at my cancer centre which really helped as I slagged off my family and friends ( well you can’t tell them what you think of them) also had a chat to a guy who does the reflexology. He’s 70 years old and while he was doing his thing we chatted as usual. I told him I was pissed off with cancer and he told me his story.
    He married the most beautiful woman in the world ( his words) and they were very much in love. Never wanted kids as they wanted each other. The first child was a happy mistake then they thought this is easy and number two came along ( horrible little shit,his words again)
    They were 30 years old when she got breast cancer and sadly she died of it. He was left with two small kids under 3 years.
    Every night after he put the kids to bed he would drink and feel sorry for himself. This went on for many months then a light bulb went off in his head and he pulled himself together.
    He then re-married and his second wife got breast cancer but is still alive. He told me, shit happens and you can crumble or get out of bed and enjoy your fucking self.

    I love this guy xx

    • maesprose says:

      Love this guys attitude!

    • Scorchy says:

      Yeah, he’s right. It’s not easy, though, but he was right. He could have been on a path to destroying his life and the children that he loved. I don’t have kids, but I’m single and if I don’t pull it together, no one is going to be there to catch me. I just hope things stay boring for a long time.

  26. Chandra says:

    You are such a fine writer. I shut the noise of the cancer blogs out several years ago because they weren’t conducive to my sense of peace. But your blog? A must-read, always. May you stay out of the pit and continue existing in Boringville.

  27. Caroline says:

    Getting into the damn cancer loop sucks. It pulls you in and you have to work to escape. Its the 24/7 of cancer land. Good for your friend to make you get out of your rut. Sometimes we all need a kick in the ass to get back to reality. But the road in cancer land is a serious killer rollercoaster where sometimes we just need a break. I don’t always blog about cancer because it is damn boring at times. And I have enough other health issues to give me options.

  28. I think I would enjoy you detailing the knitting group and why they are nuttier than fruitcakes.

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