Really great essay about cancer

BluebirdOne

https://www.theatlantic.com/health/archive/2021/08/caitlin-flanagan-secret-of-surviving-cancer/619844/?utm_source=pocket-newtabR

Although Caitlin had breast cancer, this essay is invaluable to all of us who have gone through cancer diagnosis, treatment and recovery. The "Think Positive Police" have been neutered, if we let them. Good food for thought as we go through our own struggles with how to cope...  I suspected a while back that the think positive people were well meaning, but perhaps not well informed. I also think that many of the TP people are more uncomfortable with us expressing our deepest fears, because they did not want to face their own mortality, or mine. A command to "Think Positive" sure does immediately cut off our ability to talk about what we are going through, is there a more negative thing to not be allowed to talk because you make them feel uncomfortable?

xxoo

Denise

Edit: our very own Woodstock 1st posted this, so please give her credit. It was a great essay, regardless. 

Harmanygroves

Already On the Board!

See the "Resonated With Me" thread. I love this essay, but got some serious push back from the "Think Positive" troupe when I posted it on my FB page. Guess I pushed some of their buttons!~

woodstock99

I posted this earlier in the

I posted this earlier in the week.  It resonated a lot with me and with others I know who have had cancer.  Not thart I do not try to stay positive but I guess I don't believe in unicorns and the tooth fairy anymore.   

thatblondegirl

Thank you for posting!

I wrote here in a thread many moons ago, about how upset I was with one of my doctor's nurses who perceived herself as a cheerleader and I really thought she was more of a bully! During one of those early appointments, after I had expressed my fears, she said to me one day, "I hear a lot of negativity! You need to be positive! To beat this you need to be positive!"

I was furious! I was too stunned to respond, knew it would be pointless to argue, and just let it go. Since when does positive thinking kill cancer cells? If that were true none of us would need surgery or chemotherapy! Nice! We could all meditate in our homes a few hours every day and miraculously vanish cancer! I think we should all cut and paste that article on a word document and carry copies in our purses!

I love the b***hes survive idea! Good one! When I was teaching, one of my very unpleasant students said to me....in the middle of my classroom, "You're such a ****!!" I laughed out loud! (I'm actually one of the nicest women on the planet and was well-loved by my students!) My reply: "!'m over 50 years old and no one ever has said that to me! I'm sure they've said it behind my back, but never to my face! I'm gonna take that as a compliment!"

It's extremely healthy to be allowed to express a whole range of emotions, especially when facing cancer!

?, Alicia

Harmanygroves

alicia2020 said:

Thank you for posting!

I wrote here in a thread many moons ago, about how upset I was with one of my doctor's nurses who perceived herself as a cheerleader and I really thought she was more of a bully! During one of those early appointments, after I had expressed my fears, she said to me one day, "I hear a lot of negativity! You need to be positive! To beat this you need to be positive!"

I was furious! I was too stunned to respond, knew it would be pointless to argue, and just let it go. Since when does positive thinking kill cancer cells? If that were true none of us would need surgery or chemotherapy! Nice! We could all meditate in our homes a few hours every day and miraculously vanish cancer! I think we should all cut and paste that article on a word document and carry copies in our purses!

I love the b***hes survive idea! Good one! When I was teaching, one of my very unpleasant students said to me....in the middle of my classroom, "You're such a ****!!" I laughed out loud! (I'm actually one of the nicest women on the planet and was well-loved by my students!) My reply: "!'m over 50 years old and no one ever has said that to me! I'm sure they've said it behind my back, but never to my face! I'm gonna take that as a compliment!"

It's extremely healthy to be allowed to express a whole range of emotions, especially when facing cancer!

?, Alicia

Yes!

The "be positive" advice is so ridiculous. 

yetti

BE Positive!

I hated hearing "be positive" !  When I was Dx in 2018! June26 2018; 1st Worse day of my life! I was in denial, then I was very angry and wasn't going to do any treatment, I really just wanted to be left alone to die, I DID NOT WANT CHEMO BC I DIDN'T WANT TO LOSE MY HAIR AND BE BALD ?‍?, I had my head shaved 2nd worse day of my life! i looked in my rear view mirror at my ugly ?‍? head I screamed at the top of my lungs, I drove home crying, I saw the railroad crossing sticks starting to go down, I was very tempted to go sit on the tracks to await the high speed train, then the stupid train slowed down , what a shame I could have ended my horrible life with this cancer!  I was the cancer poster person for Negativity!  I constantly thought of ways to end my life! Anyone have nuelasta after chemo treatment,? the plastic disc that was adhered to arm or stomach, and then it felt like a rubber band snap and the med was injected over the next 24/hrs!  I invented my own called Dielasta. Works in similar way  except when the patient is in a deep sleep the med is injected same way as nuelasta, the med stops the heart from beating and the patient does not  wake up!  My escape from stage 4B endometerial cancer ! 

 

BluebirdOne

yetti said:

BE Positive!

I hated hearing "be positive" !  When I was Dx in 2018! June26 2018; 1st Worse day of my life! I was in denial, then I was very angry and wasn't going to do any treatment, I really just wanted to be left alone to die, I DID NOT WANT CHEMO BC I DIDN'T WANT TO LOSE MY HAIR AND BE BALD ?‍?, I had my head shaved 2nd worse day of my life! i looked in my rear view mirror at my ugly ?‍? head I screamed at the top of my lungs, I drove home crying, I saw the railroad crossing sticks starting to go down, I was very tempted to go sit on the tracks to await the high speed train, then the stupid train slowed down , what a shame I could have ended my horrible life with this cancer!  I was the cancer poster person for Negativity!  I constantly thought of ways to end my life! Anyone have nuelasta after chemo treatment,? the plastic disc that was adhered to arm or stomach, and then it felt like a rubber band snap and the med was injected over the next 24/hrs!  I invented my own called Dielasta. Works in similar way  except when the patient is in a deep sleep the med is injected same way as nuelasta, the med stops the heart from beating and the patient does not  wake up!  My escape from stage 4B endometerial cancer ! 

 

What many who do not have cancer forget

is that it is almost an insult to a cancer patient who is 1st of all is devastated, 2nd trying to comprehend that death may not that far away, and have no way to cope. We express our fears and get the "think positive" response. There is nothing positive about any of this. I have said many times, they rob us of our ability to mourn our old lives, our future, our ability to face what might be coming. My version of thinking positive is to live like I might make it further, I plant trees, plant perennials for my birds, bees and other creatures. Planting a tree that in good times due to my age I know I will never see mature, but it gives me great comfort to know that I planted something for the future, however long that may be. Thinking positive for us in the early days after dx is somedays just getting out of bed, brushing our teeth might be a bridge too far! The advice I would give our newbies who get a cancer dx is to roll with the punches, allow yourself to grieve what you lost, book small wins as they come. All of us dx at later stages and/or more aggressive cancer types live in three month, then six month increments, if we are lucky. I am almost three years NED, grateful to still be here, but also knowing that I still wait for that other shoe to drop. Trust me, there were long stretches where thinking positive (big smile!) could not have been achieved. But we soldier on, because we have no choice. We all try to put on the best face for others but it takes a toll on us.

xxoo

Denise

Dak82

Not all the time

My staying positive advice came from a dear friend who is a 17-year multiple myeloma survivor and was once told he had 2 months to live. I never understood this advice to be an absolute. It was more like see the positive aspects of the small things in life that aren't negative. It was also a way to remind myself that wallowing in self-misery wasn't helping anyone, least of all myself. I know my friend has had some really low times so he doesn't believe in always putting on a happy face. I know his belief in God has helped him to deal with tough times. "Stay positive" can be advice to not let yourself get too low and when shared within the cancer patient/survivor community comes across differently than from well meaning friends.

Cheers,

Deb (yes that other Deb!)

Harmanygroves

Dak82 said:

Not all the time

My staying positive advice came from a dear friend who is a 17-year multiple myeloma survivor and was once told he had 2 months to live. I never understood this advice to be an absolute. It was more like see the positive aspects of the small things in life that aren't negative. It was also a way to remind myself that wallowing in self-misery wasn't helping anyone, least of all myself. I know my friend has had some really low times so he doesn't believe in always putting on a happy face. I know his belief in God has helped him to deal with tough times. "Stay positive" can be advice to not let yourself get too low and when shared within the cancer patient/survivor community comes across differently than from well meaning friends.

Cheers,

Deb (yes that other Deb!)

You Made Me Laugh!

(at the end, Ms. Deb).

An additional commentary to your post:

It is different when coming from the "outside," for sure, because when "you have to be positive!" is said by the person you are trusting to confide in, it usually comes at that vulnerable time when you have decided to trust him/her and put your guard down. When you, as a person with cancer (PWC) confides, "Hey, I'm drowning, not waving. I'm losing weight, depressed, at the end of options, suffering chemo/radiation illness..." and you hear, "You have to stay positive!," it simply isn't helpful. It says the following: "I am uncomfortable with your pain, and I don't know how to quietly sit with your vulnerability and commiserate. Let's talk about the weather, my hair, my home, my kids, anything but your suffering."

PWC feels like, "Okay, you aren't my tribe," and withdraws emotionally and physically from "Be positive" person, as BP person doesn't know how to listen. PWC desperately needs someone who isn't all about the gratitude journal. Just wants to share that her empty uterus is sore. That her doctor has been a POS. That sex is out the window for a while. That the closets are a disaster. That food is unappealing. That she has an X percentage of not seeing 2024. That she is afraid. That whatever. 

BP person wants to talk about the kids, the house, the vacation. If BP person elects to give more helpful advice, it comes in the most cliche manner. Platitudes such as "Let go, let God!" or "God doesn't give you anything you can't handle," or "Be strong / be brave." And, "Let me know what I can do." 

PWC listens, thanks BP person for getting together, then withdraws and goes back to spouse. 

Lyn70

Harmanygroves said:

You Made Me Laugh!

(at the end, Ms. Deb).

An additional commentary to your post:

It is different when coming from the "outside," for sure, because when "you have to be positive!" is said by the person you are trusting to confide in, it usually comes at that vulnerable time when you have decided to trust him/her and put your guard down. When you, as a person with cancer (PWC) confides, "Hey, I'm drowning, not waving. I'm losing weight, depressed, at the end of options, suffering chemo/radiation illness..." and you hear, "You have to stay positive!," it simply isn't helpful. It says the following: "I am uncomfortable with your pain, and I don't know how to quietly sit with your vulnerability and commiserate. Let's talk about the weather, my hair, my home, my kids, anything but your suffering."

PWC feels like, "Okay, you aren't my tribe," and withdraws emotionally and physically from "Be positive" person, as BP person doesn't know how to listen. PWC desperately needs someone who isn't all about the gratitude journal. Just wants to share that her empty uterus is sore. That her doctor has been a POS. That sex is out the window for a while. That the closets are a disaster. That food is unappealing. That she has an X percentage of not seeing 2024. That she is afraid. That whatever. 

BP person wants to talk about the kids, the house, the vacation. If BP person elects to give more helpful advice, it comes in the most cliche manner. Platitudes such as "Let go, let God!" or "God doesn't give you anything you can't handle," or "Be strong / be brave." And, "Let me know what I can do." 

PWC listens, thanks BP person for getting together, then withdraws and goes back to spouse. 

Love You Guys

I love that we Sisters on this site give voice to our brightest and darkest moments. I hated that beeping warning yet still surprise Neulasta onboard shot! Dielasta should probably not beep. 

My moods can change in a nano second from bright to dark and vice versa. Mornings are hard, sometimes I am awake for awhile before I remember, " Oh, Yeah, I have Cancer, with a capitol C"   Damn!

I have shared so many of the same thoughts about BP's as y'all. As a PWC, I receive many cards by mail, particularly from church members. Most have messages of hope and strength in verse. My refrigerator has them plastered on it. I used to pour over each one and cry and set up the pity party. Now, I tend to read them and think Yada Yada Yada. Shame on me! The kind folks sending these cards are well meaning. Bless them! I have my belief and it helps me a great deal but I also realize the Bible has Lamentations for a reason, too. Grief and sorrow are valid emotions and releasing them is freeing.

My favorite card is on my fridge and reads...You are Brave You are Strong You are Loved. That is a message I agree with! I send each of you that message tonight! Hugs. 

 

 

RainbowRita

Thanks for sharing!

Thanks for sharing that essay with all of us Denise. I think I shall have to share that with some people at some point. ;-) And thanks to the rest of you who have commented. You are all so wise. I found the emotional aspect of cancer much harder to get a handle on than the physical effects. The physical side effects of chemo and radiation therapy for me were not as bad as they could have been, but it was no walk in the park either. However, what I found the hardest to deal with was that I had few people to talk to who would just let me voice the "scary parts" of being diagnosed with cancer. I know that most of those "you have to be positive" words were well meant, but I found it so frustrating. It was pretty obvious to me that even some of my closest friends didn't want to hear the negative stuff. "You have to stay positive!" "Don't talk like that!" So of course, I translated that to mean, "Please don't discuss that with me, I can't handle it." So then I found myself censoring conversations with people I had expected to be supportive. I could handle the fatigue and the physical pain, but the emotional anguish was the most difficult. When you have nowhere to "unload" all of that fear and grief, what do you do? And then with Covid ravaging the country I couldn't look for a local support group. Everything in “lockdown” and with no vaccine yet for Covid and it being winter, I couldn’t even spend time with any of my friends in person, so that was hard too. I know I've said this before, but you women on this board "saved me" and I mean that sincerely and without exaggeration. I just wished I had found this board sooner.

But yeah, those “positive police” even though they are coming from a place of caring can just make things even harder. When I complained to my friends about my disappointment in my twin brother who has never bothered to even send me so much as a text asking how I've been doing, they would make excuses for him and say that is because he's a guy. “He's probably afraid to lose me.” Or one friend told me I just need to let it go and quit dwelling on it and focus on getting better. So my disappointment in him was going to let the cancer cells grow, I guess. There has never been any animosity between my brother and I, so I couldn’t understand what I felt was his abandonment. So I listened to my friends’ advice to just move on and not judge him too harshly, but what I really wanted to say was, "B...s… he’s nothing but self-centered jerk." By the way, I haven't heard from him since early February. And the only reason he called was to get a phone number. He certainly didn’t call to hear about my cancer. I mentioned I had my first chemo treatment the week before, but I could tell he was eager to get off the phone as he never asked any question as to how things went. I am so angry with him now; I don't know what I'd say to him if he ever did call. The sad part if that he is a "good man", but so wrapped up in his own life, I guess there just is no room any more in there for me.

Sorry, rant over. But it is a good example how things we never expected to have to deal with when diagnosed with cancer can hit us hard andother things we thought would be terrible (like chemo) end up being easier to handle than we thought they would. Cancer and all that goes with it is such a roller coaster ride, isn't it?

Lyn70

Loved the Comparison to the Roller Coaster

RR, I forget ...is it an anology or metaphor? 

You think you can see for miles from the highs of the coaster but the lows are following right behind. Some can hold both hands in the air in abandon. Me: I never take my hands off the bar. I feel ya! 

Harmanygroves

Lyn70 said:

Loved the Comparison to the Roller Coaster

RR, I forget ...is it an anology or metaphor? 

You think you can see for miles from the highs of the coaster but the lows are following right behind. Some can hold both hands in the air in abandon. Me: I never take my hands off the bar. I feel ya! 

It's an extended metaphor,

It's an extended metaphor, dear Lyn, especially the artful way you've written.

I loved the comparision to those who can hold both hands in the air in wreckless abandon, "Whee!" 

But like you, I can't take my hands off the bar either.