Archives For Societal Stigma

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I love going to the movies. It is the only place where I feel completely unplugged and immersed in someone else’s story, especially if it is a good movie. This year I have started ‘Wednesday is Movie Night’ and I go with a very good friend each and every week.

Even before the 2015 Academy Awards where Julianne Moore won best actress, I was interested in seeing “Still Alice”. My movie partner wasn’t as interested but went this week with me to see Moore’s Oscar winning performance. Continue Reading…

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Books in the ‘young adult’ genre are very hot right now. Who hasn’t heard of The Hunger Games by Suzanne Collins? In this science-fiction series, set in a dystopian, post-apocalyptic world, the teenage heroine, selected by lottery, must compete for her life against the other young contestants–to the death. In addition to fighting for her life through the trilogy, she must overcome the obstacle of saving the lives of her romantic loves.

In the Twilight series, the vampire-themed fantasy-romance books by Stephanie Meyers, the teenage heroine falls in love with an adolescent looking 104 year-old ‘good’ vampire. Throughout the series, her life is imperiled by vicious vampires, and shape-shifting wolves. She battles depression as her life force ebbs and flows.

Both series are bestsellers that depict teenage life and the (fantasized or science fictionalized) specter of death. They speak the universal language of adolescence: longing for connection, choice of partner, fear of commitment, forbidden passion – a formula for success.

We have upped the ante in the young adult genre to enter the real world specter of death, Cancer. Continue Reading…

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As communication has evolved to include blogs, Facebook, Twitter, Pinterest and Instagram, we now have this new term called ‘selfies’. A selfie is defined as someone who takes and posts pictures of oneself on the Internet. But the term or label has now somehow expanded to those who share anything personal.

Humans, being social creatures, have a need to connect, even when society in the larger context doesn’t want to. Unfortunately, once again, I am appalled by the non-supportive view of cancer in the press. On Sunday 1/12/2014, The New York Times – The Opinion Pages, posted a piece by Op-Ed Columnist Bill Keller (former executive-editor) entitled ‘Heroic Measures’. Continue Reading…

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As many of you know, getting a diagnosis of cancer, dealing with the treatment and its aftermath, is a very unique experience. Even being in the role of a caregiver or friend of someone that is diagnosed, is very different than the actual experience of dealing with all the issues of having it and being forced to look at one’s own mortality.

It has now been roughly four weeks since the release of my book “A Kick-Ass Fairy” and the reactions from friends, family, acquaintances and people I don’t even know have been all over the board.

I am pleased to say that there have been many very strong positive reviews, even from people who don’t mention that they have ever had cancer. Then there have been a number of friends who have told me if they bought the book, they would be afraid to read it. Even without reading it, they are afraid they will get ‘depressed.’

Well this is very unfortunate for all members of The Nation of Cancer.

The people who are afraid to read an inspiring testimony of dealing with cancer may be the same people who hide in their shells when someone they know is diagnosed with cancer. Maybe this may be because they don’t know what to say.

If you don’t know what to say to someone who has cancer, then tell the person just that: “I don’t know what to say!”

Maybe some of the fearful folks think if they pretend life is all sunshine and rainbows, then magically they will elude any hardship and will control whether or not illness, especially cancer will befall them. It has been my observation that the avoidance of difficult situations and topics does not necessarily make a person happier, but it can definitely make them shallower.

I have lived for twenty years with the experience of cancer. I have friends and some family, including my daughter, that have made it through, against all odds. I also know many friends that have not made it, sunshine, rainbows and every other available remedy at their disposal. Sickness is a part of life and everyone dies. Oops – a balloon buster!

I have Li-Fraumeni Syndrome, an autosomal dominant mutation of the major tumor suppressor gene of the DNA – P53 – known as the ‘guardian of the cell’. This mutation is in every cell of my body. I already have had 5 cancers and two-hands-full worth of rare, benign tumors. I was recently asked ‘do you live your life worried about getting another cancer?’ The answer is NO. I live my life with passion, vigor and the realization that we can take the challenges that life presents us and do something with them.

That is exactly what I am trying to do and am hopefully succeeding!

If you are a person that wants to be an ostrich and put your head in the sand, I say, “Good for you!” But you are not helping the cause of a cure for cancer nor are you in anyway honoring the people that have or have had cancer. If you are afraid that looking at someone with cancer will make you feel bad, then you need to look at your own issues of mortality. If you don’t want to reach out to those who suffer and lend a hand, (for whatever reason), well, what can I say, other than, if you do nothing, than at least do no harm!

Finally, if you have never had cancer, you are very LUCKY!

I don’t know one person, and I know hundreds of people currently dealing with cancer – not one person actually wanted this to happen. So for the ones that choose to see only the light and rainbows – again I say, ”good for you!” I hope your life continues to be without issues and is blessed with good fortune.

I love my life just the way it is!

What do they say: ‘Ignorance is bliss’ but unfortunately, it is still ignorant!

How do you feel about people that think or tell you your life is too depressing?

 

(Image credit: <a href=’http://www.123rf.com/photo_15936746_ostrich-hiding-its-head-in-the-sand.html’>dedmazay / 123RF Stock Photo</a>)

 

 

 

On July 4, 2013 I came across an essay that was featured in The New York Times Health section – Well Blog written by Mikkail A Sekeres, M.D. entitled “Keeping Cancer a Secret”. In the essay the doctor tells of his relationship with his patient that he has treated for two years with myelodysplastic syndrome, a type of bone marrow cancer. During the course of the examination the doctor learns that the patient has not told his children or his grandchildren about his diagnosis because he didn’t want to burden them. He didn’t tell his employees because he didn’t want them to worry that the boss was sick. The doctor then postulates on why people keep cancer a secret: it’s personal business, a fear of professional discrimination, or altruistic i.e. not wanting others to bear the emotional weight of knowing. He goes on to say “Keeping such a diagnosis hushed, a secret from those who love and care for us, is an unfair burden we shouldn’t allow cancer to dictate, too”. Reading this article disturbed me and I believe points to a much bigger problem in our society – the stigma and shame still associated with a diagnosis of cancer.

(Source: http://well.blogs.nytimes.com/2013/07/04/keeping-cancer-a-secret/?_r=0 )

Back in the Old Days – The Origin of Wrong Thinking!

In 1913 fifteen prominent physicians and business leaders in New York City founded the American Society for the Control of Cancer (ASCC). At that time, a cancer diagnosis amounted to near certain death. Rarely mentioned in public, this taboo disease was steeped in fear and denial. Physicians sometimes did not tell their patients they had cancer, and patients often did not tell their friends and families if they had been diagnosed. The ASCC set about writing educational articles for popular magazines and professional journals; publishing Campaign Notes, a monthly bulletin of cancer information; and recruiting physicians throughout the country to help educate the public about the warning signs of cancer. This was the first concerted effort to bring cancer out of the shadows.

In 1936, Marjorie G. Illig, an ASCC field representative and chair of the General Federation of Women’s Clubs Committee on Public Health proposed creating a legion of volunteers whose sole purpose was to wage war on cancer. They called themselves the Women’s Field Army, its’ recruits donned khaki uniforms, complete with insignia of rank and achievement. They went out into the streets to raise money and educate the public.

In 1935, there were 15,000 people active in ‘cancer control’ throughout the United States. At the close of 1938, there were 150,000. In 1945, the ASCC was reorganized as the American Cancer Society (ACS). According to the ACS website, after WWII “the nation could at last focus its attention on the public health enemy at home”. In 1946, philanthropist Mary Lasker and her colleagues raised more than $4 million for the Society – $1 million of which was used to establish and fund the Society’s cancer research program. In 1947, they began their famous ‘cancer signals’ campaign, a public education effort about the signs and symptoms of cancer.

(Excerpted from Source: http://www.cancer.org/aboutus/whoweare/our-history )

My Family History

As a child I learned my grandmother died in the mid 1950’s of cancer before I was born but no one talked about it so we didn’t know what type of cancer she had. I understand it was common at the time not to keep good records or even disclose this information within families. When I was older I surmised that my grandmother probably had some form of pelvic cancer since I learned that she had radium implants inserted through her vagina. That’s all I knew. Was it bladder, uterine, ovarian? Nobody talked about it. People diagnosed with cancer and succumbing to the disease often had ‘natural causes’ reported on their death certificates. So I was curious — when did doctors begin to document a cancer diagnosis?

The History of Cancer Registries

  • 1926 — First hospital registry at Yale-New Haven Hospital in New Haven, CT
  • 1935 & 1946 — First central cancer registries (Connecticut and California)
  • 1956 — American College of Surgeons requires a cancer registry for approved cancer programs
  • 1971 — National Cancer Act budgets monies to the National Cancer Institute for research, detection and treatment of cancer
  • 1973— Surveillance, Epidemiology and End Results (SEER) Program of NCI establishes the first national cancer registry
  • 1992—Congress establishes a National Program of Cancer Registries (Public Law 102-515)
  • 1993 — State laws make cancer a reportable disease

(Source: http://www.ncra-usa.org/i4a/pages/index.cfm?pageid=3301#sub2)

The Big ‘C’ Continue Reading…