Archives For Societal

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The Ken Burns Event

Just like many millions of people, I spent the past three nights watching Ken Burns’ Cancer: The Emperor of All Maladies. This has been something I have been very excited about, have talked about, blogged about, posted, and tweeted since I learned that the Pulitzer-prize winning book by Dr. Siddhartha Mukherjee was going to be made into a documentary.

My impressions:

First of all, in my history and devotion to PBS, I have never seen as many sponsors listed before the Continue Reading…

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An issue or an unmet need has come to my attention due to some recent personal experiences. For the purposes of Cancer, The Nation of Cancer, and the treatment of cancer there should be a new age group.

Now

Currently we basically have three cancer groups: Childhood Cancer, Young Adult Cancer and Adult Cancer.

The group Childhood Cancer includes babies up through adolescence, or age18. One can say with complete certainly that the needs of children and adolescents are unique to their group demographic. They are still physically growing; their brains are not fully developed. They are not legally responsible for their decisions. While they may be consulted, others, usually parents or other adults will decide what is to be done regarding treatment and care. And by equal measure the responsible adult will shoulder the financial responsibilities. Among other things, this group requires different doctors, drug dosages, social workers, case managers, and different support in general. Their training is even age specific. One could argue however, that this age group should be broken into a narrower age range.

The next group is the Young Adult group of cancer patients. These are people in their late teens up to what? 30? 35? The needs of this demographic are unique as well. Some of these patients are in pursuit of their education, starting careers or businesses, dating, forming relationships, and starting families. This group is starting out on the adult journey of their lives. Then cancer hits, the journey is suspended. Changes in body image, trust in one’s body, fertility, desirability, loss of time, wages, starting over again, are all issues. ‘Stupid Cancer’, ‘First Descents’ and other groups support some of their needs but not all needs are being met. There are financial issues, insurance issues. The issues of autonomy vs. dependence are huge.

The demographic of the Adult Cancer patient begins where Young Adult ends until the developmental stage of old age and herein lies the problem: We are missing the stage between the group Young Adult and the older age adult!

Personal Experience

In my personal experience, at 36 years old and even more than a decade later, I did not have much in common with many people in my ‘Adult’ cancer cohort. Most people in the chemotherapy treatment rooms, oncology floors in the hospital and in the support groups were people much older, patients in their sixties and beyond. Other than having cancer, I really didn’t have much in common with most of them and where they were in their lives. I was their daughter’s age, my children, their grandchildren’s age and so on.

I was a Young Adult cancer patient if you stretched the age group to 36 when cancer first hit.  I was working full-time, was already having some career success, and was the mother of a toddler and a preteen. I was very involved my children’s schools and activities. I was married, had a mortgage, my salary was depended upon. In reality, I was too old to be a young adult. My parents were becoming elderly. I was too young to get cancer.

Proposal

I propose a completely new group:

THE PRIME OF LIFE CANCER GROUP

This is the group of adult cancer patients say between 30 or so and 45 or 55. These patients are old enough and experienced enough to know who they are. They may own homes, be married or in other committed relationships. They may have children. They may be caring for these children as infants, or while the children are in school, or possibly starting college. They are well on the way up the ladder of their career. They have responsibilities. They have very busy lives.

This was the age when I had five different cancers, was juggling a job, chemo, working and raising kids. This group is not getting enough support. For example for many, too many decisions need to be made: medical leave vs. career, childcare issues during treatment, after school activities. How does one manage it all? What about cancer’s effect on sex and sexuality? What about dealing with cancer’s effect on the children? What about cancer’s effect on the non-effected spouse or partner? This is a funny term since they are absolutely affected. (affect/effect, who cares, on a roll here) What about their career? Dreams? Who picks up the slack and shepherds the family through the crisis? What kind of unique financial needs does this group have? I would say most certainly as a group they are unique unto themselves vs. the needs of a 22 or a 55 year old. What do you think?

The cancer patient in The Prime of Life Cancer Group currently is falling through the cracks and is held up by friends, family and community support. The problem is the friend group is also in their prime of life and they are busy too. Family and the community can help but it is not structured by any means. So as the cancer patient you may be reduced back to your younger days of the Young Adult group or the Older Adult patient group, not really able to relate to either.

Please share your experience if you find any of this true. Please share if you know of services directly and specifically helping the cancer community in The Prime of Life Cancer Group. If you can think of more issues please share and I will post on the blog. (Since not everyone is on Facebook, I prefer comments on the blog). Please share this if you think there is a HUGE GAP in cancer care and support for people in The Prime of Life Cancer Group! Unfortunately, I know too many people with cancer in this age group.

 

Is there a better name? What other groups of cancer patients do you think have unique demographic needs that are not being adequately addressed? Do you think cancer demographics should be more finely stratified to appropriately, successfully and inclusively address the needs of all ages?

 

Photo credit: Copyright: <a href=’http://www.123rf.com/profile_Tawng’>Tawng / 123RF Stock Photo</a>

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This past week I was the ‘featured’ guest of Cancer Nation Radio, a weekly talk radio program whose goal is to provide a forum for those who lives are touched by cancer. They broadcast locally in Las Vegas at 1230AM and live to the world over the Internet. (See: http://www.klav1230am.com/Shows/Cancer-Nation-Radio.html). (Please ‘Like’ them on Facebook and tell your friends!)  Continue Reading…

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February 4th has been declared “World Cancer Day”.

At first I was skeptical, thinking – Yikes, another awareness campaign!. Also, I was disheartened when I learned that Chevrolet would donate $1 to the American Cancer Society (ACS) for every person that changed his or her social media profile to purple. Another color (purple already taken by pancreatic cancer and a host of other cancers and maladies but also used for general cancer awareness), another corporation that needs a marketing opportunity and social engagement, probably requiring emails and phone numbers too, to sell more cars. I was thinking why couldn’t these corporations just donate money to cancer research and not funnel money through the ACS and not have to make a big marketing production? With a twenty year personal history here, I wondered, am I just jaded, skeptical about all the hype?

What is World Cancer Day?

Interestingly, as I dug around, I was quite impressed. World Cancer Day was started in 2013 by the Union for International Cancer Control (UICC). It is a membership organization that exists to help the global health community accelerate the fight against cancer. (Hopefully this will not mortph into the Global Cancer Society the way American Cancer Control morphed into ACS – yes, as I said, jaded).

Founded in 1933 and based in Geneva, Switzerland, UICC has a growing membership of over 800 organizations across 155 countries. This membership features the world’s major cancer societies, ministries of health, research institutes and patient groups. Together with its members, key partners, the World Health Organization, World Economic Forum and others, UICC is tackling the growing cancer crisis on a global scale. Pretty impressive I think! (See http://www.uicc.org/homepage)

So, What is World Cancer Day?

According to the UICC it…”is the one singular initiative under which the entire world can unite together in the fight against the global cancer epidemic. It takes place every year on the 4th of February. World Cancer Day aims to save millions of preventable deaths each year by raising awareness and education about cancer, and pressing governments and individuals across the world to take action against the disease.”

So what is “World Cancer Day 2014” about?

2014 ‘World Cancer Day’ is about globally ‘Debunking Myths’. Here are the ‘Myths’ and their positions.

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GLOBAL ADVOCACY MESSAGE:

Talking about cancer challenges negative beliefs, attitudes and behaviours that perpetuate myths about cancer, cause fear and stigma and prevent people from seeking early detection and treatment.

Governments, communities, employers and media all have a role to play to challenge perceptions about cancer to create a culture where people are empowered to access quality cancer prevention and care.

GLOBAL ADVOCACY MESSAGE:

Investing in prevention and early detection of cancer is cheaper than dealing with the consequences

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GLOBAL ADVOCACY MESSAGE

The success of early detection programmes can be measured by a reduction in the stage of the cancer at diagnosis with earlier diagnosis associated with a reduction in the risk of dying from cancer.

GLOBAL ADVOCACY MESSAGE

The provision of a skilled and supported cancer workforce is critical to the success of early detection programs for cancer.

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GLOBAL ADVOCACY MESSAGE: 

The implementation of policies and programs that support a life-course approach to prevention, and strengthen the capacity of individuals to adopt healthy lifestyles choices can bring about behavioral change, which can help prevent cancer.

GLOBAL ADVOCACY MESSAGE

Broadening the future internationally-agreed development goals to include proven economically-sound interventions that span the entire cancer control and care continuum can strengthen health systems and increase capacity to respond to all of the challenges to development.

The onus is now on the cancer community to push for cancer to be mainstreamed in the post-2015 development agenda.

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GLOBAL ADVOCACY MESSAGE

Cancer is not just a health matter. It has wide-reaching social, economic and human rights implications, and is a significant barrier to achieving inclusive and equitable development. Inequality is deepening – social and environmental factors and the double disease burden of exposures in many low- and middle-income countries are keeping the ‘bottom billion’ locked in chronic poverty and threatening national economies.

GLOBAL ADVOCACY MESSAGE

Cost-effective interventions must be made available in an equitable manner through access to information and education about cancer at the primary health care level, as well as early detection programs and affordable, quality medicines, vaccines and technologies, delivered as part of national cancer control plans. 
Social protection measures, including universal health coverage, are essential to ensure that all individuals and families have full access to healthcare and opportunities to prevent and control cancer.

“The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being”

–       The Universal Declaration of Human Rights

See (http://www.worldcancerday.org) for more information and all that is going on. This is where you can sign up for a ‘cancer free world’.

My Takeaway

Most impressive is the overall global organization of UICC. Who wouldn’t be jumping on the bandwagon to support their objectives? Hopefully they will do it without Madison Avenue-type marketing and purple washing!

My only question to the UICC IS:

WHY ISN’T EVERY DAY WORLD CANCER DAY? It should be!

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FYI: See my first blog post on whether The ‘Nation’ of Cancer is really The Fifth World!  http://www.thecancerian.org/2013/07/02/the-fifth-world-a-nation-called-cancer/

What do you think about all of this?

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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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On Saturday January 4, 2014, The New York Times published an opinion piece online in their ‘Sunday Review’ by George Johnson entitled “Why Everyone Seems to Have Cancer”.

I reacted immediately, first just from the title of the piece, which infers, at least to me, a ho-hum reaction to this devastating disease. It also, in my opinion, minimizes the impact of cancer on the population, my population, The Nation of Cancer. I read his piece but would not read the comments since I didn’t want my reaction to be tempered by the contributions of others. That being said, I apologize if my comments are redundant with those already posted.

George Johnson is a former journalist who wrote and published a book The Cancer Chronicles: Unlocking Medicine’s Deepest Mystery in August 2013. I will first say bravo on the press coverage and the possible spike in the sales of this book. But there are ways to promote a book that are community building and ways to promote that are infuriating. His method appears to be the later and I am hoping there is a large backlash.

First of all, his article makes very broad strokes throughout regarding cancer, it’s impact, what has worked, what hasn’t and criticizes a plan for the future.

MY REACTION: Broad subject, simplistic analysis, pessimistic. Continue Reading…

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November is Lung Cancer Awareness Month

With the holiday of Thanksgiving being celebrated this week in the United States, I am in the spirit of being thankful. The Nation of Cancer is very thankful for life’s gift of breath. Currently, my Aunt Marion (my god mother) is dying of metastasized lung cancer at 84. The cancer has a massive presence in both of her lungs, her kidneys, lymph nodes, her liver and has eaten through several vertebra in her thoracic, lumbar and sacral spine. She has not smoked in 20 years.

So this begs the question, ‘What is the cause of her lung cancer?’

I’ve included some current facts about this difficult cancer.

Mortality 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>)

 

 

 

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Breaking Bad

As I anxiously await the final episodes of the AMC hit drama Breaking Bad that begins tonight, I am reminded of how it all began.

Remember back to January of 2008, Walter White was diagnosed with potentially fatal lung cancer. His cancer diagnosis presumably set off the next 5 plus years of Emmy Award-winning drama. However, potentially there are other reasons for him ‘breaking bad’, one of which is not living the life that would afford him to leave behind enough money to support his family after his death.

Is it his anger at his diagnosis that forces Walter to evaluate that even though he’d played by the rules (including not even smoking) that he got screwed anyway that forces him to ‘break bad’? Or does his imminent mortality allow him to give himself permission to say what the heck and to hell with everything? Continue Reading…

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I was prompted to write this post after a friend shared a blog post on Facebook. http://zenofmetastasis.blogspot.com/2013/03/honk-if-youre-hero-ps-you-are.html

In his post the author and blogger Kevin Lankes writes “Cancer is not a fight.  It’s an illness.” Further on he says “And so there are those who have the propensity to create a mythology to cover up the realities of the disease, in order to apply an idealized version of it to mesh with our moral code or cultural viewpoints.”

He also tackles the concepts of courage and heroes and concludes that these terms should not apply to having cancer. He concludes his piece with “If you think someone is a hero for surviving cancer, or courageous, or inspiring, then you’re part of the problem. You’re doing it wrong. Anyone can survive cancer.  And anyone can die from it.  You want to sell your book, or promote your movie with a heavy sugar coating of mythology wrapped around the serious, ugly core of a terrible disease; that’s fine.  Leave me out of it.”

Like me he believes everyone is a hero, with or without cancer. As someone who has been living (fortunately) with cancer for 20 years and after I just finished writing a book, I was really struck by his viewpoint. I interpreted from his message that cancer just ‘is’ and having it doesn’t attribute any qualities on the person with cancer. So I decided to question the history and notion of why we use the War Metaphor.

The War on Cancer as a Metaphor on Two Fronts Continue Reading…