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Posted 11/25/2013 2:22 AM (GMT 0)
This is one I have struggled with myself. I imagine it's another case of how we are wired.

gawker.com/positivity-is-bullcrap-when-you-have-cancer-1469975747

"My relatives are obviously disappointed too. I think that they expected me to exude the upbeat attitude of the survivors on television commercials, donning pink ribbons and walking marathons, declaring a new lease on life. Cancer patients are expected to be poster children of a movement, meant to reassure the masses that this plague, and even imminent death, can be overcome with positive affirmations and attitude adjustments. We are a society that believes in control, to the point of delusion. We are a nation founded on the idea that any obstacles can be surmounted and dreams reached through hard work and self-control. I am the unpleasant face of cancer. I am not accepting pain and loss gracefully. I am a disappointment."
Posted 11/25/2013 2:36 AM (GMT 0)
that's a good article and I mostly agree.  this year I feel alive again and I can see how depressed I was through diagnosis and treatment.  my marriage suffered, my wife is still seeing therapist,  and a few weeks before my 22nd clean anniversary I had to raise my hand and admit that I was using again.

the silver lining to all that is I made through the other side -- at least for now -- i'm still married and I have almost two years clean again.  but to anyone who thinks I should have been more positive tell me about it when you are in the barrel of else just shut the hell up.

ed

 

Posted 11/25/2013 3:33 AM (GMT 0)
It's a good heart felt article. There are a number of stereotypes out there about cancer patients and survivors. Like being an upbeat, "cancer warrior" I wasn't upbeat - rather a mass of fears and depression until I could see the possible light of the treatment working. and I wasn't a fighter. Someday I might be able to express that better.

I believe in supporting people where they are not pushing them into my beliefs or forcing my expectations on them.

Thanks for sharing this link,
Andrew
Posted 11/25/2013 4:07 AM (GMT 0)
Great statement. The article, and the idiocy of some of the responses. One chided us for claiming to be "survivors". I am one, until I'm not. Then I'll be dead, and others will pick up the flag (I hope -).

I'm positive about what I'm doing, but not about where I'm headed.
Posted 11/25/2013 12:34 PM (GMT 0)
I've struggled with this one too. That's why I put up a thread a couple of months ago asking if people had found someone they could "really" talk to, honestly and openly. I'm in a much better place now, with good results from my initial therapies, but there's always that lurking sense of sitting on a time bomb.

This paragraph explains so well what I hear pretty regularly, things like "eliminate sugar, that's what cancer lives on", nonsense like that.
Ron was also motivated by fear. Many people want to believe that cancer can be overcome with enough willpower and exuberant positive affirmations. The notion that we can control cancer by dieting—cutting gluten, dairy, GMOs, and alcohol from our diets or binging on kale juice, green tea, and soy—has trickled into Facebook feeds and taken over targeted ad space. We feel more in control of our lives if we believe sick people got that way by making bad choices. This hopeful but woefully misguided belief that if the cancer patient eats like a Paleolithic person or ignores her fears, she will ‘beat the odds,’ denies patients the freedom to mourn the loss of her old self—because cancer almost always kills a more fearless version of ourselves.
Posted 11/25/2013 1:10 PM (GMT 0)
Touching and heart felt article. Thanks for posting, David.

Personally, I do very little "sharing" with friends and family. The fear she mentioned is palpable when there is a discussion so I keep it light and brief. I think that maybe, rather than fear, it is the helplesness that loved ones feel as they want to do something but there is little they can do.

I do try to keep a positive outlook but confess that at times anger comes through and I have a self pity party. Anger at my bad luck, the medical industry for exploiting the misery of the unfortunate patients with ineffective treatments, (I know it is a business not a charity), and mostly the cloud that it has placed over my life. My plan for my retirement is not what I envisioned because I must consider the cancer above all else.

Don

Posted 11/25/2013 3:10 PM (GMT 0)
My moto is "no bad news is good news" aka - things could be worse.

I just read about a woman that beat cancer - survived a motorcycle crash.... Goes outside for the first time in months and gets hit by a car and dies.
Posted 11/25/2013 3:45 PM (GMT 0)
after being diagnosed i had 4 weeks of shock/anxiety/tears etc. Then realised i was stuck in this situation and turned positive. I knew my cancer was not too bad and could be overcome. I did it for myself and everyone around me.But deep down i was still worried and upset.
4 weeks since the op and am doing well.maybe i am too positive and optimisitic.Everyone tells me to be careful and not do too much. I am just so glad to get through the op and be here writing this. But i know that i will always have to have regular tests and there could be more problems ahead.But i have got used to it.
Positivity keeps me going but hides the worry i have. I try to set a good example and show people this can be beaten. I do not look any different before and after the op which surprises people.
The main problem i am having is some people dont know what to say or do. Some are even keeping out of my way. I have got the word round that i am okay talking about my cancer. I am sometimes feel i have a disease which i can transmit!! I may have cancer but otherwise i am still the same person.
I have been so lucky as my cancer was caught early and my chances are good. But what if it had not been caught.What if it had spread? Or what if i had been in the position of the author of this original post? I really don't think i could be so positive as i am now.
Just got to keep going and make the most of my life now
Posted 11/25/2013 4:47 PM (GMT 0)
When I was scheduled for surgery I had a neighbor tell me that surgery wasn't needed; what I needed was apricot pits. He gave me a book on the subject. I thanked him, parked his book on a shelf, and had my surgery. I know someone else today who won't have a wireless network in her house because she believes the radio waves are dangerous, but who nevertheless has a cordless phone system.

The sad truth is we are surround by people who believe all kinds of nonsense and who won't be persuaded otherwise by evidence or reason. So for the most part I just nod my head and change the subject. Fortunately I've not yet had anyone tell me that my cancer is a result of my attitude. If someone did, I'm pretty sure I'd take exception to my usual nod and change subject approach. I'd most likely tell him/her the only negative attitude problem is busybodies who blame patients for having cancer.
Posted 11/25/2013 4:50 PM (GMT 0)
You've all probably heard of Elisabeth Kubler-Ross, the 1960s Swiss psychiatrist who became famous for her model of the psychology of death. She postulated that when faced with their own impending or inevitable mortality, people reacted in one of five ways:

Denial
Anger
Bargaining
Depression
Acceptance

It's pretty clear that the woman in the above article was in the Depression stage (but Anger could be argued as well). We don’t know if she ever moved on to another stage, which, as Kubler-Ross pointed out, tended to vary greatly with the individual. Some persons would remain in one of the above five stages for years, while others would be in one stage for a while, then move on to another, then even go back to a stage where they were before. She maintained that it was all a very highly individualized process.

Because it's so individualized, where each one of us here on the forum might be in this process, if we are at this point in our lives even into this process at all, only each of us can say. There has certainly been Anger in some of the posts here, a lot of Bargaining (posts alerting to new meds and treatments, for example), and some Depression. I haven't sensed a lot of Denial in the posts here ("No, this isn’t happening to me"), nor much Acceptance ("I just give up").

But getting back to the article above, it's clear that the writer was very unhappy with the way society as a whole treats the terminal illness issue. That makes me wonder if a society as a whole also experiences the five stages of dying.

Could be. For example, when the Black Death devastated Europe around the year 1350, killing half the population of Europe, it became normal routine, a daily experience, to get on the oxcart and travel to market down the road, while passing piles of dead bodies of plague victims waiting for pick up. ("Nothing to see here, move along"). In modern times imagine the garbage truck stopping in front of your house on pick-up day every week and collecting dozens of dead bodies instead of your house trash, and you're not thinking a thing about it. ("Steve, the truck just went by, go pick up the cans, please"). Imagine family members dying on a weekly basis, and it almost makes you yawn. A monstrous world for the Europeans of that century, but one they couldn't avoid.

To cope with such a world the people of that era developed an Acceptance model of dying which may seem bizarre to us but which worked for them. There was art in which a black-robed death skeleton playing a flute leads corpses in a merry dance of death, the Latin phrase "Memento mori ("Remember that you are going to die") inscribed on drinking cups, which the bearer would see every time he took a drink of ale, or the calling together of neighbors to watch the dying of the fellow next door when it was time, a sort of normal social gathering in that era. This was a society totally in Acceptance stage.

So where are we as a society? Which of the five stages are we in with respect to our own overall cultural attitude toward death? Well, we're certainly not in the Acceptance stage, certainly not like those 14th century Europeans. There's definitely some Bargaining going on in our society, with all of the medical articles constantly coming out (and that's a good thing). Anger? Depression? Yes, there are those.

Personally, I think we're still pretty much in Denial, with Bargaining (through medical research) a close second. Will we as a society eventually move on to one or more of the other stages? Interesting question and only time will tell. Do any of you think we're actually more in one of the other stages?

But there is one thing that really does remain constant in the psychology of facing death: our personal attitudes. We can't control most of what happens to us, but the one thing we can control is how we react to it.

And there's a great source of strength in that
Posted 11/25/2013 5:29 PM (GMT 0)
Almost by definition you won't see anyone in the denial stage on this forum. We have seen some of their wives or loved ones posting on their behalf.
Interesting question on society. Society is usually a reflection of it's leaders' personalities.
Anger in facing death is a vicious circle. Other people don't like being around an angry person and that leads to more isolation and more anger.
Posted 11/25/2013 6:14 PM (GMT 0)
Davidg:

Thanks for the article. It was very poignant. I know the emotional extremes I've had have been very difficult. I have always been a fairly even-keel person. PC changed all that. For me, it was the depth of one bit of PC bad news after another (ie: climbing PSAs after surgery and then after SRT). That is rough. Just as rough is awaiting PSA results.

But, I said emotional extremes because since HT I have had some great PSA scores. But then a few bad liver enzyme test scores. On and on. I greatly resent anyone saying just get positive and get over it. Easy to say when you have (apparently) been cured of PC. NOT easy when your life is full of appointmets/tests/and for me the impact of HT. I realize chemo is worse.

I also resent the term Cancer Warrior or Cancer Survivor. A survivor is someone who goes to war and makes it home. The threat is over with. I never chose to fight this war. Yes, in a sense, we are all Cancer Survivors...until we are not. But it's not the same thing. Each to his own on that!!!

Mel

Posted 11/25/2013 6:41 PM (GMT 0)
There are two issues here, as I see it. The first is whether a positive outlook is helpful -- whether it can save your life. I contend that it can.

When I say that I don't mean that it will make your life longer, necessarily, or that it will magically fix your medical problems. It won't. But a life spent in anxious misery is no kind of a life to live. A positive attitude will save whatever life you have left from that. That is the transformative message of GFMPH gatherings: that you can be sick, dying by slow degrees, and still have a pretty good time while you are still here. As Sonny says, "Each day is a bonus, choke all of the life out of every day you've got."

This isn't to say that some days don't put up a good fight. But that, on balance, the effort is rewarding.

The other issue isn't limited to Prostate Cancer. I worry that we as a society have lost much of our ability to recognize tragedy as it is, we want to see tragedies as errors -- mistakes that can't happen to us because we are too smart, too virtuous, to careful.

I remember the first time I thought about this. I was listening to some women talking about a cat that had been run over by a car. One of them said "Well, that's what happens if you don't keep you cat indoors." It's true enough -- the cat's death was the result of decisions made by the cat and its owners -- but it is also pointlessly callous, unkind and unhelpful. Stuff happens. There are ways to improve one's odds but life, being life, will have its tragedies. Whether it's a cat being run over or a husband being diagnosed with advanced prostate cancer, one's first response should be to try to give comfort, not to try to find the "mistake" that explains why the same can't happen to you.
Posted 11/25/2013 6:57 PM (GMT 0)
Mel,

I've heard you say that before. I have the opposite reaction. I am OK with being a cancer survivor or a warrior.

What bothers me is to talk about prostate cancer as a "journey". Mine isn't going to be a "journey" if I can help it. It's going to be an excursion. I'm going to get back to my life. It's not going to all be about cancer. It may not be the same life as it was, or as it would have been, but it will be a life, not a prostate cancer "Journey" whatever that is. I will always have worries about my cancer but I refuse to let it define me, who I am or where I am going.
Posted 11/25/2013 8:24 PM (GMT 0)
Peter:

Different people, different reactions.

Oddly enough, I never went through the "Why Me?" phase. It happens!

I also agree that you are doing yourself a disservice to be morose all the time.

This is one of the reasons I LOVE working. It is something I truly enjoy. It is also part of maintaining interests and finding happiness in life. This is one of the ways I do that.

But I liked the article. We are all wired differently and how we react to things -- especially a cancer dx -- seems to be a case of how we are wired.

Mel

Posted 11/25/2013 11:03 PM (GMT 0)
Peter, I like that.
It is what it is; it's here, but it's not going to define me .

I like to stay involved here, but it's crossed my mind that it might be better for me to just step away completely for a while, until it's PSA test time again. There's nothing else happening in my life related to PCa except this forum (well, and some side effects). It's great to share experience, and hopefully to help others by it.

There's some kind of a balance between involvement, helping, remaining aware, and ignoring it enough to just get on with life. I'm still on HT for 2-1/2 more years, so it's not like I can completely get it out of my (increasingly addled) mind anyway.

Post Edited (Redwing57) : 11/25/2013 6:49:18 PM (GMT-7)

Posted 11/25/2013 11:27 PM (GMT 0)
I must be wired differently. Maybe it's because I was waiting for this diagnosis for the 35 years since my father died of prostate cancer. It's strange, but I don't think much about my having cancer. As others have said and which I fully agree, "it is what it is." I simply tried to deal with it in the best way I could based upon the most information I could obtain from multiple sources including the participants on this forum. I'm sure its much more difficult for the younger guys with young children and a lot ahead of them. I still have some projects that I'd like to see succeed. I do not see myself as either a victim or someone who needs to exude positivity. I'm just a guy whose cancerous prostate was cut out who hopes the surgeon got it all.
Posted 11/25/2013 11:29 PM (GMT 0)
From what I understand, we all have cancer. It's just that some people have immune systems incapable of keeping the cancer under control. So it is helpful to do everything we can to strengthen our immune systems.

Stress is a killer, so meditation or similar mind exercises can be extremely positive. Cleaning up our environment (diet, exercise, pollutants, water, emf, etc) can lead to an improved immune system.

Pretending to have a positive attitude most likely does nothing to help, while eliminating stress and learning to be "calm" does. Doing everything you can, in addition to medical treatment, can give one a feeling of empowerment and control.

A great book is Anti Cancer - A New Way of Life by David Servan-Schreiber. I just started rereading it today. A lot of great information that can help put you in control.
Posted 11/26/2013 2:29 AM (GMT 0)
Thanks for the article David, poignant and at times difficult to read.  Couple of points to be made right up front, first, yes we are all wired differently and I completely acknowledge that.  Second, let's be honest here - I am a very positive person but if I had gone through what this young lady has, and suffer as she is now, I too would find it very difficult to remain positive.  So then I believe it's a combination of the ability to have a positive attitude being somewhat determined by what you are facing.  In this young ladies situation I do understand how it would be difficult to be positive. . . .

Now, having said all of the above - I absolutely believe that having a positive attitude and doing the "right things" when it comes to diet and exercise help - period, no questions asked, plenty of medical/professional/scientific studies to back it up.  Will attitude and "living right" cure cancer - of course not.  Will it help in the fight - YES.

My take on life has always been one of being positive, of "I WON'T LOSE."  Lived my whole life that way, and still do - including after being DX'd with PCa.  I clearly went through all of the stages that 81gyguy listed, pretty much in order - but didn't spend much time with any of them.  I decided, O.K., I've got "Cancer" - but I'll be darned if I'm going to LOSE.  I've always tried to "do the right things" in terms of diet and exercise and an absolutely positive attitude - that some have told me is "Confident, not cocky".  Once DX'd I amp'd all of that up sigificantly.

So then to my earlier point, did my life style of doing the right things and being positive prevent me from getting cancer - no.  But will it help me stay ahead of it by "stacking the odds in my favor" (quoted Casey here) - absolutely YES. 

I could have chosen the route of "oh poor me" and wallowed in self pity; I could have whined to those in my life about "why me, I've done all the right things" - but did not.  Instead, I choose to look this beast in the eye, and kick it's ***.

So yeah we are all wired differently, I sure the hell am. . . . . .

Posted 11/26/2013 2:53 AM (GMT 0)
Thanks for the link davidg (i tried emailing you recently btw..my email in my sig - can you email me? )

I personally think the grind has so much to do with it...I just found a website that calculates #days between dates - I have had cancer for 1,656 days ---- I wish I could have bottled some of the positivity when it was in good supply....
Posted 11/26/2013 3:10 AM (GMT 0)
Yooper, you had me until you quoted Casey! kidding... Look, I think we can have a different attitude and level of positivity but still put up a vicious fight. I'm not a positive person on the outside although I think it's far more complex than that and that it can simply be a defense mechanism to mitigate potential disappointment. I've always been the most competitive in the sports I've played and was a scraper whether it was on the soccer or rugby field or when I did mixed martial arts, but I didn't go in with positivity. What I'm saying, is that i'm not sure positivity is a requirement to put up a fight.I have an easier time buying into the fact that life is mentally more refreshing if one has a positive attitude about life and doesn't sweat the small stuff and sure, that in itself is probably healthier for everyone. But again, it's about how we're wired and who doesn't love a grouch anyway? Also agree on the degree or type of cancer. I sometimes feel guilty when i talk about my cancer compared to what some here and many in my family have faced. Once I believed it and educated myself I really did believe that I had a better shot at defeating this than falling because of it. Let's be pragmatic and admit that that can afford us a different attitude. I didn't have to be in denial and wasn't because I knew I was going to beat this for at least 10-20 years at worst. My mother is in denial because if she weren't she would have to accept that she has days or weeks. She not a dummy though so positivity or not, denial or not, glad she has religion to help her through it.

Richh - dead on about stress and calming down. I read your post thinking you wrote it for me and about me.

Clanda - don't think I haven't noticed your awesome attitude in the last few weeks. Although I think you ar eon to something with your point about age and perspective, I also don't think I have ever been as optimistic as you my entire life. I envy your ability to be so.

Mel - I'm with you on the resentment. I just roll my eyes at my family when they tell me to be upbeat and positive about things like my PCa. At least with them I get to be direct and tell them to stop wasting time and get real. I am who I am. But when I say that, my dad will say "that's just an excuse". But it's not, because my character is a spitting image of his father.

81gyGy - 2 1/2 out of 5 for me...

don826 - Hope you find loved ones to share this stuff with, it can be on your terms.

intheshop - I wish what you believe was the mantra here.

Ed - I see your pictures everyday, I know you look at things around you with a positive attitude for lack of a better word. Your pictures are beautiful and their essence highlights the beauty in things that surround you.

Anyway, glad this short piece provoked such a reaction. Gawker is an odd site but sometimes they publish some very real pieces. Not long ago I posted a photo essay of a guy who photographed his wife as she died of cancer, it was beautifully done, you could sense the love, but it sucked. Think that was form Gawker too.
Posted 11/26/2013 8:08 AM (GMT 0)
" To Be or not to be, that is the question " William Shakespear circa… I dunno, while back…...
Posted 11/26/2013 4:09 PM (GMT 0)
David, I agree with your comment "I sometimes feel guilty when i talk about my cancer compared to what some here and many in my family have faced."  One of the dilemas I constantly face when posting out here is the fear of hurting those that are struggling with this darn disease.  So why do I?  Because I continue to try to provide help, hope and guidance to the new guys.  Again it is at times difficult because of the potential ramifications to some of our own. . . . .

However I do completely (and respectfully wink ) disagree with your comment about "i'm not sure positivity is a requirement to put up a fight."  It may not be a requirement, but (in my mind and psyche) I'd much rather stand shoulder to shoulder with someone who "knew" we were going to win the battle.  Again - with all due respect we are all wired differently, and I fully understand that cannot be challenged.  I'm simply trying to explain why I believe so strongly in a PMA and what it can do. . . .

There are unlimited articles, information and studies on the benefits of positive thinking, the "glass half full" if you will.  I found this on the Mayo Clinic website that I think sums it up well:

  • Researchers continue to explore the effects of positive thinking and optimism on health. Health benefits that positive thinking can provide include:
  •      Increased life span
  •      Lower rates of depression
  •      Lower levels of distress
  •      Greater resistance to the common cold
  •      Better psychological and physical well-being
  •      Reduced risk of death from cardiovascular disease
  •      Better coping skills during hardships and times of stress

    • It's unclear why people who engage in positive thinking experience these health benefits. One theory is that having a positive outlook enables you to cope better with stressful situations, which reduces the harmful health effects of stress on your body. It's also thought that positive and optimistic people tend to live healthier lifestyles — they get more physical activity, follow a healthier diet, and don't smoke or drink alcohol in excess.

    They also acknowledged that you can't simply wave a magic wand and change a pessimistic personality trait to an optimistic one - however they also added:

    Indeed, some studies show that personality traits like optimism and pessimism can affect many areas of your health and well-being. The positive thinking that typically comes with optimism is a key part of effective stress management. And effective stress management is associated with many health benefits. If you tend to be pessimistic, don't despair — you can learn positive thinking skills.

    As I stated in my earlier post, can a PMA/exercise/healthy diet prevent, or "cure" cancer - of course not.  But can it help prevent recurrence in some instances - and also prevent something else such as a heart attack from doing us in - yes....

    Interestingly enough when I checked my personal e-mail this morning there was one from Medscape titled "Extreme Nutrition: Can It Beat Cancer?"  Very interesting piece, including the following statement:

    "The success of cancer treatment depends on the patient's ability to tolerate it, which in turn depends on the patient's nutritional status before treatment begins. Nutritional screening is therefore critical to outcomes.

    The role of nutrition throughout cancer treatment is also important, and often underestimated. Good nutrition can mitigate the side effects of treatment, improve quality of life, and raise the chances of survival."

    Again, going back to the original link davidg provided on that young lady and what she is going through, (and as the Medscape piece acknowledged) - with cancer or any other fatal condition, one will get to the point where the end is emminent - but until/if that time comes - one is in a far better position with a positive attitude and healthy lifestyle.

    Again, just my own personal views and outlook. . . .

    Posted 11/26/2013 4:42 PM (GMT 0)

    I also wanted to add to this thread by going to a situation within my own family, specifically my Mother. She is 74 years old, and was Dx'd with BCa in June of 2012, two weeks before my PCa Dx. Single mastectomy and a week later the tubes and stiches were removed and she was gliding back into her normal routine. A week later on a CT scan follow-up she was told the cancer had mets to her bones. She denied chemo and went on HT and continues to stay ahead of it. Then two months ago they found two large growths on her ovaries; after surgical removal and lab analysis the two, five pound growths were found to be benign.  Two days later she was released from the hospital and once again quickly back to living her normal life - see the following.

    Now for some background - my 74 year old mother is a 5th degree master blackbelt in Tai Kwon Do, having been active in this for the past 30 years including the annual judging of upper level blackbelts in Wisconsin.  She walks 6 miles per day, every day, and works out regularly on her "forms" in her "Dojo" that Dad built in the basement of their home.  She has always followed a "heart healthy" diet, gone the homeopathic route when it made sense - and has a positive, won't fail attitude that cannot be denied. . . .

    So then you have to pause and consider - first of all did her choice of lifestyle prevent her from getting cancer - no. 

    Is the way in which she chose to live her life a significant influence in her quality of life, longevity and ability to stay ahead of whatever she faces?  In my opinion - an easy, unequivocal YES.   

    Guess I at least come by it honest. . . .

    Posted 11/26/2013 5:11 PM (GMT 0)
    A Yooper,

    Good for her. I guess you do come by it "naturaliy". Even without any evidence to back it up on my part, thinking ahead positively would seem to have fewer negative implications for the body than being pessimistic. Being negative and downbeat does seem on its face to lead one to feeling worse.

    I just can't seem to be very introspective about my prostate cancer. Next!.
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