CATEGORIES [ GENERAL, CAREGIVING ]

Sympathy for the masses

BY SUSAN MCCLURE | MARCH 4, 2010

I was wandering down the aisle of my local drugstore, looking for a wrist brace for my terribly clumsy 15-year-old, when I happened upon something that stopped me in my tracks. There, in a bargain bin in the middle of the aisle, was an assortment of boxed greeting cards. Mixed among the "happy birthday" and "thinking of you" cards were a stack of boxed "sympathy" cards for $1.99. That's right, for only $1.99, you can be prepared for the death of a friend or loved one by having an assortment of cards at the ready for just such an occasion. But wait! Why not throw in a box of "get well soon" cards so you're covered just in case your friend pulls through? A set of two costs only $3.00!

I picked up the box of cards, examining the back to see the various sentiments contained therein, but there was no description. But hey, when shopping for bargain sympathy cards maybe the sentiment isn't that important. I opened the box with a card that carried a message stating, "I'm here if you need me." I think it should have said, "I'm here if it doesn't take too long or inconveniences me in any way."

Doesn't someone's death warrant just a little personal attention? Unless you're a pastor or have lots of relatives in Haiti, the boxed sympathy card idea just shouldn't be condoned. I've lost too many friends and loved ones to this disease since my diagnosis in 1997. Each loss was painful and personal. None warranted a generic card. We can't be this busy and overwhelmed as a society... can we?

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CATEGORIES [ SURVIVORSHIP, GENERAL, CAREGIVING ]

Gilda's Club and The Wellness Community Join Forces

BY SUSAN MCCLURE | DECEMBER 14, 2009

The Wellness Community and Gilda's Club Worldwide have officially united and unveiled their new, combined identity--the Cancer Support Community. The Cancer Support Community will likely be the largest professionally-led network of cancer support worldwide. This is great news for cancer patients across the U.S. because it will expand the footprint of both organizations, thereby bringing more services to more communities. The new organization includes a network of nearly 50 local Gilda's Clubs and Wellness Community centers worldwide, more than 100 satellite locations and online support services that extend around the world.

"Our common history and commitment to the cancer community is what brought us together," said Kim Thiboldeaux, president and CEO of the Cancer Support Community. "This union creates a strong, vital, global network that will bring the highest quality cancer support to the millions of people touched by cancer."

These offerings include a comprehensive menu of personalized and essential services, including support groups, counseling, education and healthy lifestyle programs. Additionally, the organization is working to expand its vital services to meet the urgent needs of cancer patients and their loved ones. To ensure no one has to face cancer alone, these support services will soon be available to people in all 50 U.S. states and internationally through the Cancer Support Community's network of community-based centers, and at hospitals, community oncology practices and other non-profits, as well as online. The Cancer Support Community is also exploring the use of novel technologies, including mobile, to help extend the reach of these meaningful resources.

I have had the privilege of visiting the Gilda's Club in Dallas several times and am impressed by the variety of support services available to patients and their families. This new union will make those services even more spectacular.

I only have one problem with all of this... the new name. The Cancer Support Community? Really? Gilda's Club and The Wellness Community are such well-known brands in the cancer world. The new name doesn't play off either of them. It's like Coca-Cola and Pepsi joining forces to become Bubble Water. Can't we do better? My colleague, Jeremy Heath recommends changing the name to Wilda's Community. Hmmmm.

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Mom and teen home, but debate rages on...

BY SUSAN MCCLURE | MAY 29, 2009

I'm sure many of you have been following the plight of Daniel Hauser, the 13-year-old Minnesota boy who scrambled to the Mexico border with his mom in order to avoid undergoing court ordered chemotherapy. For those of you who haven't, let me catch you up. In January Daniel was diagnosed with Hodgkin's Lymphoma-- what experts are calling "a highly curable disease". He had one round of chemotherapy before his parents told doctors that he wasn't going to have any further treatment. The first treatment resulted in a reduction of cancer, but because Daniel hasn't had another treatment since, his cancer has returned to pre-treatment levels. The doctors were very concerned. So concerned in fact, they turned the matter over to the courts. They said Daniel has a good chance of achieving a complete remission if he resumes treatment. They felt that Daniel's life was in jeopardy and that his parents weren't acting in his best interest. Knowing that the courts were likely to force Daniel into chemotherapy, he and his mom fled town. Well, they're home now, less than a week since their life on the run began. Daniel's parents have told the judge that they will abide by whatever ruling is made--even if that means undergoing more chemotherapy.

But why did the Hausers decide against such a proven treatment plan in the first place? Like most issues related to cancer, it's complicated. The family is Roman Catholic, but they belong to a group called the Nemenhah Band, which promotes a "Do no harm" philosophy. They believe in natural healing methods advocated by some American Indians as an alternative to traditional treatment. In fact, Daniel and his mother believe that the treatment for his cancer is what will end up killing him-- not the cancer itself. They were seeking "less toxic" options to treat his cancer.

That decision resulted in a heated national debate surrounding the government's right to intervene in cases such as this. According to a recent MSNBC poll in which participants were asked if parents should be allowed to refuse cancer treatments for their sick children, public opinion was split. Of the 77,276 people who responded as of May 28th, 55% said "Yes, families should be allowed to make their own decisions in every aspect of medical care", and 45% said "No, refusing care that could save someone's life is a form of medical neglect". Many who answered "yes" said that while they did believe that the parents were putting the child at risk, this is America and we have a little document called The Bill of Rights that protect people in cases such as this. Those who answered "no" said that this was just another form of child abuse and that refusing to render medical aid to a sick child is unjustifiable.

I was thinking about my own cancer treatment and wondered how I would feel if someone told me that I had no right to refuse a particular therapy. Granted, I was 35 when I was diagnosed--not 13. What do you think? I'm looking forward to your comments.

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