Is anyone else an atheist with BC besides me?
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Hi. New here. Thanks for the NYT article. Some very helpful, but hopefully common sense advice. Much the same could also be said for talking to someone with cancer, except the "just do it" part. My personal pet peeve these days is well meaning folks who drop by the day of or day after chemo when I'm hibernating to check on me unannounced! Seriously - please call or text first so I can at least time my nap accordingly. I really don't want to drag my tired ass out of bed so I can cut and find a vase for your flowers just right this second!
Ah well - it's all well intentioned, I suppose.
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I think the kindest thing to say to someone whose loved one has a serious health event is 'I'm sorry. How are you doing?' Followed by, 'how can I help?' I know from spending 10 days at the hospital with DH that the offer to water the garden was gratefully accepted. I just couldn't get home early enough to fit it in.
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kber-So true. My friends know to never show up unannounced at my house. Usually a day of and two days after chemo I was very hyperactive due to the steroids. I had purchased season theater tickets prior to being diagnosed with cancer. So on two occasions the day after chemo treatments I went out to the theater with friends. We had a great time. But if I had felt badly I would have cancelled and given my ticket to another friend. On both occasions I couldn't eat nor could I drink because food tasted horrible because of the chemo. I still had a great time. When my friends would try to push themselves and come over when I wasn't up to it I would simply say no thank you. One friend did show up unannounced and I didn't answer the door. You are right. There are times you do not want to drag your ass out of bed and do all the niceties.
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kber, I could not agree more. Put a note on your door saying "knock softly and if I don't come to the door, I am sleeping." You can leave a bucket of water on your porch too!
I told one of my oldest and dearest friends, when she offered to visit, "You are a good enough friend that I can tell you the truth... please don't come... wait till I'm feeling better, when I can enjoy you."
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santabarb- sometimes even your nearest and dearest friends don't listen. Some friends want to believe you are on your deathbed and others believe you have nothing more than a bad cold. It's crazy how the mind works.
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https://community.breastcancer.org/forum/152/topic...
I had written something similar in this post... A Cancer Patient's Bill of Rights" ... nobody seemed to pick up on it but I think there must be other "rights" people have in mind!
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OK - I legit lol'd at the idea of a bucket of water on my front porch.
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i didn't understand. Bucket of water?
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Bucket of water - to discourage uninvited visitors.
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and they can put their flowers in it and GO!
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Santabarbrian - so much nicer than my initial thought. I am feeling a bit wicked today.
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Wren - I agree and would add that specific offers of help are best. I know that when people asked me how they could help when I was in the midst of treatment, I was flummoxed. But if they said they wanted to drop off a meal for me or give me a ride to an appointment, I gratefully accepted.
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Haven't posted in a little while.
I am currently get mindf$@ked by the whole "cancer industry" discussion and how there are people being interviewed out there who have never done conventional medicine (except maybe a tumor removal surgery) and then apparently have cleared and healed completely from their stage 4 diagnosis. I specifically saw these videos on the Chris Beats Cancer website, where there are several women interviewed who discuss this. Basically they all appear to share one thing in common - Christianity. And I am not a christian and won't ever be one. So this feels like it could be serious bible thumping propaganda. Believe in a christian god and all your cancer will go away!
My scientific and rational brain realize the "holes" in the methods and ways he goes about promoting his anti-chemo propaganda but my intellectual and emotional and spiritual body really want to "believe" and start to wonder what would happen if I went off the medication?
Any one else struggle with this? Any thoughts opinions comments criticisms applause?
Thank you for your responses. This is the stuff that really torments my soul!!!
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I'd love to see a randomized double blind clinical trial offering treatment vs prayer. Nobody would join!!
Yes, there will always be outliers.... Remember, some outliers get conventional treatment for stage 4 diagnoses, and remain NED for decades. Outliers are not what we base rational decisions on. The bell curve is real. By the same token, you can have a super treatable stage one, get treatment, and progress anyhow.
OTOH, there are therapies that are not conventional that have decent stats behind them, and there may be people who squeak through without conventional therapy using those. High dose Vitamin C for example, which has efficacy against cancer. Or there are the people who do nothing (say a stage 0, grade one, tiny tumor) and whose bodies or immune systems take care of the cancer on their own. (Scans are now picking up cancers that would have self healed and never been picked up 10 years ago.) Say you have one of those dinky, slow tiny cancers, and you pray.... you could attribute the disappearance to prayer when it's your plain old immune system!
If prayer were reliable, there would not be so many Christian posters on this site who progress or die.
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There have been studies about the power of prayer and it has not been linked to more positive medical outcomes. For some it improves quality of life if you are so inclined in that direction. There was NIH study that showed similar results. Staying positive had no impact on outcomes, but did, if it was internally driven, improve quality of life.
Interestingly, externally imposed expectations that the patient "be positive" were actually linked to worse outcomes. The speculation was that the pressure to stay positive was linked to patients being less forthcoming with symptoms. It also delayed or interfered with end of life conversations and decreased the quality of care in the final stages of treatment.
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To add to what santabarbarian says: We FORTUNATELY live in a rather new era of Evidence-Based Medicine. For the first time, data-sets and a body of research can be mined to give statistical probability outcomes. These can inform treatment. Of course there are outliers in all statistical probability treatment decisions. No guarantees, and as we all know, doing all the 'right things' healthwise is not a guarantee. Nor is treatment always effective. And there are spontaneous remissions; bodies have very unique immune systems. My MO says that we just don't know all of the environmental and genetic and immune system things that affect cancer's emergence and its progression.
But OMg. If we ascribe credit for a cure to a deity, then this omnipotent higher power also must inflict harm willfully, create suffering, and the same logic should assign blame to a deity for all evil, psychopaths, murder, torturers.... Did this god also plan the Holocaust and does he/she also purposely allow childhood trauma? Does this god choose to give me a good day and you a bad day, every single day, like a puppeteer? This stuff really rankles me. When people are 'blessed' when happy things happen, and 'the Lord' is making all the good times occur, what about when unimaginable tragedies occur? Did 'the Lord' decide to randomly inflict trauma and harm? ARRGGHH.
Prayer and belonging and meditating and connecting with others has some positive attributes. Lots of neuroscience and anthropology research explains why humans love bonds and belonging (to a church, to a group, to a clan, to a club, to a team, to an online breast-cancer support group
), and how being in a group satisfies a lot of innately-evolved needs. Teamwork and social interaction has been essential to the development of human societies. Churches are an example of a group of people helping each other, sometimes positively. And they're also an example of how a system can devolve into one of persecution for some and power for others, as is the case for lots of human groups. But, let's add science and reason to the mix, in 2019.
I know someone who actually said to his wife that their toddler didn't need that booster seat; she must not have enough faith in The Lord, who would protect their child. This is an example of the idiocy of that brainwashing. And, my sister divorced that husband.
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LovefromPhilly. You asked, "
My scientific and rational brain realize the "holes" in the methods and ways he goes about promoting his anti-chemo propaganda but my intellectual and emotional and spiritual body really want to "believe" and start to wonder what would happen if I went off the medication?
Any one else struggle with this? Any thoughts opinions comments criticisms applause?"
I wondered about this when I was undergoing treatment. I thought that there would come a day when we look back and are appalled by the primitive nature of our treatments, especially radiation.
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Hahaha that's a good cartoon!
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Hahahaa! Great cartoon!
And thank you friends for helping me see clearly when I get all bent out of shape!!
Ananda you wrote: “I wondered about this when I was undergoing treatment. I thought that there would come a day when we look back and are appalled by the primitive nature of our treatments, especially radiation."
And that's EXACTLY what I mean! I feel like the folks who say they cured themselves naturally often present themselves with a “glow of having the answer and inner knowing" that has allowed them to out-do the “system" and conventional medicine that then allows a freedom from the chains of all types of things (corporate evils? Consumerism? Capitalistic thinking?) and like they have “seen the light" or something that I am still struggling to find it trust of put my faith (whatever that looks like) into.
Arghhhhh
I guess it all makes me feel like I'm not as “evolved" or something because I haven't said no to the evils of conventional medicine and that I must be full of toxins and emotional baggage since I can't or haven't tried to heal without the use of conventional medicines.
Seriously - and annoying - I struggle around this topic in my head so much!
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I love this thread. So, there's an interesting article about how it was conventional treatment that cured Chris and not all the alternative/positivity/prayer baloney: https://www.quackwatch.org/11Ind/wark.html
It blows my mind that people will have surgery and then say they "refused" conventional treatment and healed themselves. What the hell do they think the surgery did? And I hope we do soon get to a point where we have less damaging treatments - none of us are thrilled about the burning of radiation and the altered chemical weapons of chemotherapy. But it's the best we have and if we need either or both, I'm glad they are there.
The idea that the cancer "industry" is purely motivated by money and doesn't really want a cure is a kick in the face to all the many dedicated oncology providers and researchers. I watched my breast surgeon give a talk on current treatments and she teared up as she talked about her passion for working with women who have breast cancer and her role in getting a clinical trial going for TNBC to bring top tier research to our neck of the woods. You can't tell me that she doesn't want a cure with everything in her. And yes, Big Pharma is a huge money-making proposition. But does that mean the drugs have no value?
So, I'm calling bullshit on the idea that those of us who don't rely on prayer and happy thoughts are somehow less evolved and just blindly willing to poison, burn and mutilate ourselves. It's an empirical question and I'd love to see people enroll in a trial where they might get prayer-only.
And Hiking - your former BIL is nuts!
I remember watching a show once where a woman had been in a car hit by a train when the car got stuck crossing the tracks. Her husband and brother were killed. She told the interviewer that God had protected her. And all I could think was, "Wow! So God must have really disliked your husband and brother!"
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I love quackwatch AND I’m a practitioner of Chinese medicine - which is ironic because the authors of quackwatch really dislike Chinese medicine.
But they do a great job of investigating and uncovering BS.
A great reminder of how amazing marketing can be and how easily malleable our minds are!
Thank you all for commenting. It is incredibly helpful and truly, truly sets me back on my feet again into reality!!!
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Santabarb… A bit delayed in response, but Yes, Yes, Yes, agree. '' I'd love to see a randomized double blind clinical trial offering treatment vs prayer. Nobody would join!!
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Hi again. I was gone to see the last of my sons getting married for the first time( at 45) in Washington State. He followed the girl up there. He is the best helper when I needed some help. Speaking of helping, I found that when someone asked me how they could help, I asked them for specific tasks with beginning and ending points. Like I would never ask someone to wait for me to do chemo. Just to drive me and drop me off. Or run to the store for a few things. It made them feel like they were helping ,and and they were. It also gave us a time for a little time to chat, one on one.
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SoCal - Congrats to your son! I did ask a few friends to go with me to some appointments. Not chemo, but they took me and waited with me for a few appointments when I was still unable to drive. Two of them went in with me for meetings with the oncologist, because I wanted a second set of ears. One friend (who was a pretty new friend at the time but who'd been through it herself) took me to my port surgery, waited through it, helped me dress afterwards, and insisted on sitting with me back at home for an hour to be sure I was okay. I was deeply grateful.
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"I wondered about this when I was undergoing treatment. I thought that there would come a day when we look back and are appalled by the primitive nature of our treatments, especially radiation."
I always replay Dr. McCoy in Star Trek 4.
McCoy: What's the matter with you?
Patient: Kidney… dialysis.
McCoy: Dialysis?! What is this? The Dark Ages? Here! You swallow that and if you have any more problems, just call me!0 -
I have seen so much improvement in treatment over the past 18 years, since my diagnosis.
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People say the darndest things without thinking. Exactly if you get better god not docs get the kuddos but of you don't get better it's the docs fault???? Makes no sense to me. Treatment has come a long long way. I hope you are doing well Jo terrible thing to go through. I read quackwatch and science based medicine and listen to the skeptic's guide to the universe sometimes they make me mad too lol but it is good to hear the other side and try to be well rounded.
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Speaking of improvements in treatment, I am having a thyroidectomy this Tuesday because they highly suspect one or two nodules are cancerous. But they cannot prove this either way as indeterminate findings are not uncommon with thyroid nodules. This makes me crazy, but two expert opinions support the surgery. I feel that they remove thyroids today like they used to remove uteruses. Worried that I am still in an archaic time. I am still always amazed at how little we do know. And then at other times, amazed that we have robots doing surgery!
If there is no cancer, I will thank god. If there is cancer, I will blame my prior archaic treatment for bc, radiation. Lo
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TB: Sorry you have this on your plate of worries. Most intriguing cognitive dissonance in your last paragraph. Hoping that you wake up from surgery to learn that there was no evidence of cancer. (((hugs)))
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Just to be clear, my thanking god is a spin on what Nan had just said about thanking god when things go well and blaming something else when it does not.
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