Years ago, a friend and co-worker of mine with ovarian cancer lost all of her blonde hair during treatment. She donned a red wig and declared, “I’m going to do cancer as a redhead!”
Her upbeat nature made it easier on the rest of us to accept her illness, so it was that much more shocking the day I walked into the newsroom to see a pink wreath on her desk.
Senator Kennedy has appeared upbeat after a cancer diagnosis. (Neil Hamburg/Reuters)I was reminded of my friend when I read the article “When Thumbs Up Is No Comfort” by my colleague Jan Hoffman, who writes about our cultural expectations of cancer patients to be upbeat, stoic and ready for battle. But often the reality is that people with cancer are scared, sad and depressed — and rightly so.
“That optimism reassures anxious relatives, the public and doctors, regardless of whether it accurately reflects the patient’s emotional state,” Jan writes. But she asks whether the game face maintained by high-profile cancer patients, such as Senator Edward M. Kennedy, really inspires others or simply reinforces unrealistic expectations that everyone should approach cancer with stoicism and courage. She writes:
Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.
“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.
What do you think? Is upbeat and positive the best way to cope with cancer? Or does unvarnished optimism deny us the opportunity to confront our real fears? Read the full story here, and then share your thoughts below.
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“Is upbeat and positive the best way to cope with cancer? Or does unvarnished optimism deny us the opportunity to confront our real fears?”
Best for whom? What is best for the individual will depend totally on the individual and vary wildly. What is best for the family is obviously as little reminder of the suffer’s emotional pain as possible. So yeah a truly saintly cancer suffer would put on a brave face 24/7 for the family’s sake. But since when did we REQUIRE saintliness of cancer victims? They have as much right to express themselves (or not) as the rest of us. Too much talk about what’s an admirable response and not enough about what helps THEM cope with their situation is a selfish response by society.
Even in my own family there is a tendency to praise those who fought and then calmly accepted their death. That’s what’s expected and it gets kudos. I think that’s wrong. I think that my aunt who felt judged for her sorrow in the last months of life deserved better than to have the implicit comparison with her sister who had been your classic fighter/activist/accepted death when it came patient. In fact I think sorrow and grief by the dying is a much more NATURAL response so to vilify it by comparison is unjust as well as cruel.
Who says we have to fight with a smile on our face? Who says we have to die with calm dignity? Are we actors or real people? Real people don’t want to die, they are grief stricken. They cry. They get depressed. They don’t want to face their friends. They don’t want to think about it. They want to blot it out or do what onlookers call wallowing.
Now it may seem I’m juding the fighters, maybe I am. Maybe though it is just trying to even the score here for my aunt. I was the ONLY member of the family who didn’t call her a wallower. The only member of the family who visited her every day for 3 months just to let her cry with me. The only one who didn’t try to distract her with trivialities. Those who need to respond the way she did should not be judged negatively.
— MarianneI do not like the metaphor of “War” on cancer. I am fortunate in that I had a non-agressive cancer, treatable with surgery and radiation. I am doubly fortunate in that I had good health care coverage, so there was no problem with getting a second opinion, and going to a major medical center with a great surgeon who was much more familiar with the type cancer and had much more experience with the surgery than local physicians.
I did not think of it as a war, because the thought of “attacking” the cancer did not motivate me. Once I understood the course of treatment, I simply concentrated on doing what was required to treat the cancer.
— NewJerseyanIt’s a matter of personal style. I think studies show your attitude does not really affect your outcome–but it can affect how you get by day to day getting to your outcome. Personally, I am not a positive thinker. I usually am positive I am ticked off. I liked the part in the story about Sen Kennedy raising his middle finger. That would be me. People who feel they “should” be positive often feel that if they are not, they are contributing to their own illness. I think that is garbage. I do not have cancer that I know of, but I did lose right in one eye in the last 18 mos, despite four surgeries. I told every doctor, “Look, I am not positive, I am not plucky, so don’t even go there.” But of course, their aides and techs said, “Try to remain positive.” OK, I am positive I am going to throttle you if you say that again! (And if I can feel my over to find your throat!)”
— StarI learned three days ago (on a Friday) that I may have cancer. Not having a chance to make the follow-up visits because of the weekend, I went about my usual tasks and found myself shifting from up-beat and laughing with friends to numb and reflective when alone. Both seem to be helpful to me and maybe to others. The greatest difficulty seems to be staying honest and authentic, and that is the ground I looking for. Can the professionals help us with that?
— J. FarahHaving had cancer twice in my life and losing a mother to the disease, I can say with certainty that everyone has to deal with this disease in their own way. Trying to cheer someone up who is in need of simply being listened to, isn’t helpful — you’re not a social worker or psychologist, so aren’t really equipped to deal with depression or deep sadness. But what you are equipped to do is be there, listen to the person, run errands or help take care of chores for them, and just show you care. The hardest thing when dealing with a life-threatening illness is when friends or family drift away, and aren’t there for you. Frequent phone calls, little notes, frequent emails — whatever you can do to be in touch and present in the person’s life is what counts. Don’t try to solve the problem for them, because you can’t.
— Liz in MichiganJust read some Susan Sontag…
— LeighAs an 11 year breast cancer survivor, your emotions are so mixed, it’s hard to know what your feelings are. I found it depended on the person who you were with at the moment affected my emotions. If the person was upbeat, I was comfortable; if the person was feeling sorry for me (which I couldn’t stand) I tried to make them understand exactly what was happening to me. I’ve always considered myself luckier than most; the cancer was found early; I went through chemo and radiation without horrible side effects.
— BarbI have had metastatic breast cancer for over 6 1/2 years with recurrence after recurrence. I am now on my 6th line of chemo. There are only two ways to deal with this condition - curl up in a ball and not deal or choose to go about your life. I choose life. I am not brave or courageous, but life is too precious to give in to cancer. I have my bad days but I have more good ones. You really learn who truly cares about you and who do not or who cannot deal with this situation. I’m blessed with a great husband, kids, parents, and good friends. My life has been a great ride and I pray that it will continue with the strides being made in bc treatment.
— Joan SegalListen to Nuala O’Faolain, an Irish writer who died in May three month’s after being diagnosed with lung cancer, talk with interviewer Marian Finucane on Ireland’s RTE radio station about her illness and approaching death.
After the interview, RTE was deluged with messages from people, thanking her for her frankness and unique response to her illness.
— Mary O’GormanI’ve finally read what I’ve believed for years, the “war” metaphor is far over and misused. As for cancer, we Americans are told to never accept defeat and I’m reminded of this just the other day when I saw a commerical on TV of a women who was told she had two months to live, then found a cancer treatment center and now she’s not only alive, but thriving. We hear these stories, often without the facts that explain more than we are told, and think we, too, can do this. On the other side, I saw firsthand my sister-in-law fight her inoperatable and terminal cancer for two years, living and dragging her families and friends through a horrific and miserable life. Had she made peace with it and herself and let her life take its course, I believe everyone would have gone through and come out of the process in a much peaceful and respectful way. I only hope that if I should have to make a decision with regards to cancer, I will have the strength to do it in a way that is honest and right for all involved and make peace with myself and the cancer.
— Anthony FI think that as Americans we have a battle mentality. We’re still a relatively young nation, with a strong emphasis on virility and vitality, and that can carry over into “You’re gonna whup that cancer and kick its tail!”
There’s also a certain Pollyanna expectation, that we’ve been told so long and so often that positive thinking really does change the world, so a patient who doesn’t keep a positive attitude just isn’t seen as trying hard enough. I think that can be really damaging if the patient is having a hard time facing the cancer; it puts a certain amount of blame on the patient to say, “Hey, if you can’t stay upbeat and positive, you’re not doing your part! The doctors can only do so much!”
Maintaining a positive attitude requires a certain amount of energy input, and if the patient has to use that energy being a ray of upbeat sunshine so the others around him or her don’t feel nervous or depressed, that’s energy that isn’t going to healing. I know it’s scary to accept that someone we know has cancer, but I’ve seen some people get downright selfish about saying, “Well, why can’t she work a little harder at keeping a good outlook? She’s so down all the time!” The point at which the fighting spirit, the positive outlook, the Pollyanna sparkle starts being about making things easy for the people around the patient is the point at which the patient needs to start telling people to get bent.
There’s a lot of power in the simple phrase, “I’m scared,” and a lot of cancer patients don’t seem to feel like they have the right to burden others with that fear.
I think there should be a clear boundary between the expectation that a patient keep a realistically optimistic outlook about treatment and the expectation that a patient will feel pressured to demonstrate fighting spirit and positive attitude he or she manifestly does not feel, simply for the sake of meeting other peoples’ expectations.
— RowanHaving recently made it through stage 4b cancer and all the chemo, radiation and isolation ward I can tell you there is no right way to make it through cancer. There are times you need to be upbeat, but there are times you need to be a crab. For example there’s no reason to be a brave soldier when the nurse asks you your pain level: proper pain management is critical to surviving.
All you can do is your best and be yourself. Through my ordeal everyone complimented me on how upbeat I was through it all. And I was, but that’s how I approach everything. It’s my way. If I were in Hell, I’d be making jokes about the warm weather. But sometimes I envy the badger who can demand better treatment. I was glad to have my wife looking out for me.
Probably the worst aspect of keeping the brave face is that no one really understands how hard it is and your boss expects you back at your desk and has no qualms giving you a bad review for the work you were unable to complete while on disability. For that, being a curmudgeon can be an asset.
— Bill Basso#8 says “There are only two ways to deal with this condition - curl up in a ball and not deal or choose to go about your life. I choose life.”
Don’t you see how negative that is about other people? No one is telling you how you should deal with it, whatever works for you is great. But to make up this false dichotomy and then inflict it on all cancer patients you are quite explicitly saying that my aunt who cried every day for 3 months because she was simply dreadfully afraid and sad, is less worthy than you. What should she have done? Put on a fake smille? Taken up a happy-drug habit? Or just go and die already and let you happy folk get on with it? It’s VERY hurtful to those of us who support family who aren’t like you to hear them put down in those terms.
Personally I think her response was both totally human and natural AND healthy.
The equally invalid characterization which mirrors your take on this would be to say that anyone who can be upbeat must be wanting to die. See how preposterous that sounds? And your flip side sounds just the same.
— MarianneIf faced with cancer for which the prognosis were poor and debilitating pain and loss a certainty, I would choose a clean, well-planned suicide.
That was an honorable option in many historical societies. Only religious fanatics oppose this. The book “Final Exit” has good information.
It’s not a war; it’s a life. Lives end.
— FredI feel very sorry for Ted Kennedy and his family because not only are they dealing with a serious medical condition, but they have to do it in public. Every choice he makes is going to be second guessed and dissected in the news. No matter what he does there will be someone there to say it’s not only a bad decision but a bad example.
— diI too hate the “battle” metaphor. It gives the illusion that the cancer patient (and family) have much more control than they may actually have, and it can create an enormous sense of guilt and shame (i.e., if the cancer doesn’t go away, it’s because you didn’t “fight” hard enough).
My husband died of colon cancer in August 2003. He had spent the previous five years being a “fighter,” maintaining a positive, upbeat approach, turning to every alternative approach he could find (including Christian prayer), convinced that if he just worked hard enough, he could beat it.
When hospice was summoned in July 2003, he was shocked. He turned to me and said, “But I’m not ready. I never thought for a second I might die.” (When he was diagnosed in January 1999, he was already 4th stage, with metastases to the liver.)
While the upbeat approach/battle approach certainly gave him hope and confidence, it also deprived him of any chance for reflection and contemplation. His last six weeks were miserable, because he felt he hadn’t done anything to prepare for death. While I can easily see how his attitude may have helped his quality of life for several years, it diminished it at the end. But who can say it was the wrong choice? It was absolutely his choice to decide how to deal with his illness, and if denial helped him get through those years of treatment, that’s just fine. I only wish he’d had a greater sense of peace at the end.
There is no correct approach to dealing with cancer — there’s just the best you can do on any given day.
— Karen H.I’ve had the misfortune of having everyone in my immediate family who has been disagnosed with cancer die of their disease. So, I really don’t know personally any cancer survivors, even though a huge number of people do survive.
As others have said, there is no “right” way to deal with the disease. My mother pretty much gave up when she knew there was no hope. My stepmother literally fought until her last breath. Even as she was dying she kept talking about getting phsycial therapy so she could get strong enough to back on the chemo. It was heartwrenching to watch, but that was her way.
What I find frustrating is when people say things like “look at Lance Armstrong, he was on his deathbed and came back to win the Tour de France!”. As someone else mentioned, cancers are very different. Lance was fortunate that he had a type of cancer that is treatable even in late stages and had access to the best care available. Its amazing what he achieved after beating his cancer, but his experience is far from applicable for most people diagnosed with cancer. So, while it was nice to hear people say encouraging things to and about my family members, but there were times when I wanted to scream when some people made it sound like stage 4 cancer could be beat just by being strong and hopeful and “being like Lance”.
— SydgrlPlease God if I ever get cancer I hope that I will not be expected to do this or that. People cope as best they can, that will be different for different people. Enough of the expectation of stoicism!
Also Tara - check out this:
http://www.theage.com.au/national/gene-test-for-bowel-cancer-fight-20080602-2kw7.html
Can you find out anything about this study or the presentation in Chicago? Since prognosis has everything to do with our reaction and coping with disease, this would be highly relevant to the blog.
— JillyFlowerMy coworker just died of lung cancer, so we’re all a bit somber here. She had a positive attitude, but I know she was scared and not ready to go.
I suppose it’s like any other hard situation; people get through it in whatever way feels right to them, and those of us on the outside need to follow their lead, even as it fluctuates. Don’t be morose when they’re positive, and don’t be pollyannaish when they’re feeling serious. As appropriate, help take care of them to the extent that they want/need, fits your relationship, and of which you are capable.
My other reaction is to adopt a preventative attitude. What can we do as a society to decrease cancer rates and other illnesses? Frank discussion and changed behaviors about nutrition, pollution, lifestyle, and other issues may save us from having more of these experiences in the future. We can’t always prevent illness, of course, but we can try to live as well as possible.
Food Is Love
— DebsAs a 3+ year metastatic breast cancer survivor who was diagnosed at 44 and has been in complete remission for over 2 years now, I’ve thought a lot about language and how we use it when dealing with (in my case) an incurable disease. Early on in my cancer trauma, a friend of mine quoted to me from the Tao that I could “fight it gently” . This somehow helped me since I’d never been particularly bellicose and I was a little freaked at the idea of transforming myself into a tough warrior in the way that so many people were telling me I had to be in order to “beat” cancer. The war imagery, as Susan Sontag so deftly explained (as someone has already noted here), is definitely problematic at best. But, on the other hand, there is very much an element of “fight” that you have to muster up if you choose to be your own advocate when dealing with a difficult condition in a system that adds to the problem by presenting its own challenging set of obstacles (to put it mildly). And to fight gently — just the concept of it — worked for me. It helped me to seek out that off-protocol 2nd opinion that really did save my life and lean on friends in the field who know much more than I’ll ever know about the cancer field, and that has certainly made a difference for me in how well I’ve done with this thusfar.
But everyone is unique and every cancer patient is unique with a unique, individual case of the disease. I’m a big believer in letting people deal with cancer in the way that works best for him/her. If you want to be grumpy, be grumpy — God knows you have reason to be. And if you want to be upbeat, like Bill Basso, be upbeat. I know I was (and am). But I also know that I would never go through chemo without being on anti-depressants. I personally would rather go out having some jolly, in denial days interspersed amongst the heart-broken ones. But, again, it’s an individual thing.
— Pamela LiptonAs an 8 year survivor of stage IV bladder cancer I can attest to the list of emotions of the title– and also to the fact that it is an incomplete list. Upbeat, stoic, scared, yes, and also terrified, depressed, happy, euphoric, hopeful, hopeless, isolated, reaching out for connection, brave, chicken, boisterous, silent, fatigued, energetic, and traumatized. That is the short list, and it is all so individual, and may all be experienced during the same day. But we still have to show up. As a group, we patients marvel at how we make it through what is essentially a traumatic series of events, having the floor fall out from under us, being suddenly faced with our mortality and then “voluntarily” submitting to all sorts of barbaric and painful procedures to save our lives. And all of this while worrying about our own physical response to treatment, and the emotional reactions and expectations of those around us.
Cancer is the unvited guest at the family table, and like Sheridan Whiteside, it takes over and alters family roles, priorities and plans for the future.
We now know that cancer is a disease of the immune system, and that our immune systems are affected by our emotions. I recall the saying that people could think themselves into the grave, and I decided that I was not going that way.
I got through 6 months of chemo and then extensive surgery by being informed, being in a good hospital for the treatment of my particular cancer, doing Reiki, anti-cancer self-hypnosis visualizations during the actual treatments treatment which were accompanied by music I find calming and healng, keeping life as normal as possible, having the love, suppport and presence of my husband and daughter, and staying connected to friends via email and face to face contact. I worked when I could and stayed home on those days I could not. And I learned to have hot flashes while wearing a wig.
And the terror does not end. After treatment finishes, it is about the possibility of a recurrence. Every quarterly, 6 month, and then annual scan is accompanied by a major spike in anxiety. I knew I finally had confidence in my wellness when I worried more about them finding a good vein for the CT contrast than about the outcome of the test.
May all my fellow travelers live long and prosper.
— Karen GreenePeople with cancer are told to fight, to win the battle, to be courageous! All of us are told to run around the block to support people and to win the battle!
We are told that our attitude is important after we get cancer and that we should follow medical advice. We are told that new research is promising and hopeful. We are told to take tests to learn when we have cancer.
We are told that we are winning the war!
We have been told all these things for at least the last 50 years. So why are we living, surviving or existing in fear? Why has the war not been won? Why are “survivors” trotted out in ads and fund-raisers year after year? Why are there marketing webinars, conferences and continuing education seminar vendor halls filled with companies and providers anxious to explain how to make cancer services attractive? Why is every cancer center and cancer hospital the best? Where are the scientifically researched data to support all these claims?
The simple fact is that we are not winning any war, winning any battle or turning hope and promise into reality. We are still being offered hope and promises, some of which is realized, but not consistently, without maximum safety, often with severe and limiting adverse side effects and at a price that is affordable (with/without medical insurance). The latest promising research reported to a recent oncology conference and reported in the NYT was about a cancer drug extending life five weeks. This was considered statistically significant although the cost was not mentioned in the article.
If we were winning or had won anything, we would be having another discussion, maybe one that goes as follows:
“I am fighting to beat getting cancer in the first place.”
“How?”
“I was given scientifically researched data about steps that I could use to battle the risks of ever getting cancer by improving my health and wellness.”
“I did not know that kind of data was available.”
“It wasn’t until many people including cancer advocacy organizations, health professionals and people concerned about cancer demanded independent research funding to study factors that caused cancer and could be eliminated, reduced or reversed.”
“Yes, sounds like that life style stuff which my medical doctor says doesn’t work for everyone.”
“Yes, you are correct. But neither does surgery, radiation and chemotherapy work for everyone.”
“So what does the research show?”
“Stop smoking and you see sharp reductions in lung cancer. Minimize or stop hormone replacement therapy and you see significant reductions in breast cancer.”
“So what? We all knew that.”
“Correct again, but now studies are showing which other life style changes actually work in a consistent manner. And the findings are being followed by research to learn how to best implement and motivate people to act on the information.”
“Has anything worked?”
“One promising and hopeful result is connecting lesser cost medical insurance to participation in qualified wellness programs. I saved enough premium contribution to buy 20 gallons of gas per month. Not bad?”
Wouldn’t it be nice to get together with friends and family this July 4th and not talk about illness and disease, its costs and the terrible side effects the treatment produces?
Now that thought would be a wonderfully frightful way to live (unless of course you’d rather avoid speaking to friends and family in the first place!)
— healthinfoSometimes it needs to be ok to not be “ok”. The whole brave warrior thing needs to be revised. I remember a story of Marines hit by a roadside bomb, the Marine tried not to scream but did so when he realized every one else was. In the real world the bravest scream and cry.
— LarryIt’s a difficult question because you don’t want your family and friends to be suffering helplessness along with your personal fears, but you also don’t want to be pollyana about something as serious as health, life and death. I appreciated the article, however.
As breast cancer patient going through chemo with other therapies to come, one thing I’ve been questioning as of late is why our country’s medical profession and pharmaceutical industries are not focusing more on preventative measures. Sure, some of us are not so lucky, but there are millions out there who have yet to be diagnosed and have the chance to take actions to prevent cancer. It becomes more important to shift this paradigm because treating pancreatic cancer, for example, or AIDS or breast cancer with the same therapies doesn’t seem as rational as targeting the individual cancer. I know of too many people who die from the therapies that are supposed to treat cancer, rather than from the cancer itself. This goes to the youth of this country, as someone mentioned above, because it also implicates free market decisions at any expense. Pharmaceutical companies developing chemo drugs make rich profits for the executives of those companies but do little for the patients who are suffering side effects. And there are more advanced drugs out there able to tailor an individual’s cancer, but it’s simply not as profitable as treating with last century’s drugs. Of course, this type of change can only occur through strong leadership and an informed public. And right now, the only way the public becomes informed is through individual diagnosis.
One way to start is for our doctors to be more open to honest communications and room for patient expression. I hope that’s not too unrealistic. I plan to try it before my next chemo appointment.
— JenniferQuick response to comment about Ted Kennedy and family. Everyone who is diagnosed, not just celebrities, has to deal with public input, whether on-the-job or through community activities. It’s a lot harder when one is on one’s own and has to encounter the litany of reactions coming from those one deals with on a daily basis. In some ways, celebrity, and certainly privilege, ameliorate certain issues, like access to rare treatments, that may very well be better options. It may be less interesting to focus on the person who lives three floors down from you, but it doesn’t deserve less focus or sympathy.
— Jennifer