The Give and Take of the Support Group

I met some nice people today. People who I would not normally have crossed paths with in my daily life. They were a happy, optimistic bunch, or seemed so to me, in spite of the circumstances that brought us together for the 90 minutes allotted this morning. Most of the small group knew each other, but were largely strangers to me when I walked into the room. It was my first time attending a cancer support group.

I had no idea what to expect from the meeting. The truth is, I had not been in any particular rush to attend; my impression of such a gathering was based on flimsy Hollywood portrayals, and that fuelled more by onscreen AA meetings than anything else. The coordinating nurse who ran the meeting was also the person responsible for setting me up with my oncologist and taking care of most of the administrative functions revolving around my early care from the point where my tumor was identified until I had begun my chemo drips. And she has been a part of the process since, if not directly, keeping tabs on me and checking in now and again. She had asked me on several occasions if I would attend a support group meeting and I had always put it off, thinking that I was doing fine and so, really, it wasn’t something I really needed to do.

Then she sent me a flier, with a personal note at the top, and I went and put the date in my calendar. And then there I was.

When I arrived, the room was empty, so I walked across the hall to the waiting room at the hosting cancer center. Enjoying a cool glass of water, I waited until the room began to fill up and then joined the group. The coordinating nurse told me a few times how great I looked, which was nice to hear, though, honestly, everyone there looked pretty good. Of course, of the seven other people in the room, only four actually had lung cancer. But those four looked great. My first impression wasn’t from the other people in the room, though; it was the cheese. There was a small but respectable spread on a table along the side of the room, and I am always a sucker for good cheese and coffee. My expectations were low for the coffee, though it was drinkable enough for me to ultimately enjoy several cups. The cheese was surprisingly good, which I discovered after selecting several choices and settling in. That not only speaks volumes about the care put into things, but it set the mood for me. Maybe there wasn’t wine, but at least I wasn’t being made to suffer.

It turned out that the guy to my left was a saxophone player. It helped him strengthen his lung — or his lung and a half, or whatever he had left. He told me in quite a jovial fashion about his surgery five years ago, then the recurrence he had about two years after that along with the typical bouts of chemo and radiation. Then he proceeded to tell me that he felt better than he ever had, in his entire life, and how he would gladly do the last five years over again, chemotherapy and all. This was a happy guy. This was a guy who had learned something precious from his cancer, a lesson about being in the moment and noticing the beauty around him; a lesson about being happy, really, and that is what he brought to the table.

In fact, all the people there had smiles on their faces. Maybe it wasn’t strictly due to the fact that most of them were living with cancer — but it definitely had something to do with the fact that they were all living. And not just that they were in the process of “being alive,” so much as that they were experiencing the act of being alive, really noticing it and appreciating it. Nobody had to do anything extraordinary for that experience, either; it was just the moment to moment identification with this existence that mattered. Perhaps it was about connection, to other people or to nature or to their own senses, but that part is probably too personal and rooted in individual identity to sift out.

While we were all there for lung cancer, it was also clear that we all had rather varied conditions. I’m pretty sure that only two of us were Stage IV with adenocarcinoma, though even the two of us were quite different. For all our similarities (young, non-smokers), there were just as many differences in the cancer’s manifestation and how it was discovered. There was only one “small cell” patient, a vibrant and personable woman whose main concern, shared by a few of us, wasn’t about her own longevity as much as it was about being there for her daughter and grandchild. I don’t think that ever changes for a parent.

It did not take long for the conversation to turn to Breast Cancer Awareness Month and all those pink ribbons. The pink ribbon is a very noticeable icon, more so, I dare say, than the red ribbon for AIDS that inspired it and quite possibly even the yellow ribbon for veterans that preceded that. It has been marketed supremely well since the early 90s when Estée Lauder™ got behind it along with the fashion industry. And of course, the Susan G. Komen for the Cure® foundation, which originally gave out the ribbons for an event in New York and also used a ribbon motif (albeit a specialized one) as their logo, is a very well-funded and highly visible organization. But really the success of the pink ribbons has rested on a very glamorous media campaign, one which has quite often sexualized the disease. It opened a floodgate of funding for breast cancer research and helped to make breast cancer a manageable, chronic condition for many patients, rather than a terminal disease. On the other hand, the research funding made available for breast cancer is highly disproportionate to that given to other, more prevalent cancers.

I don’t think that is necessarily a bad thing. After all, if the money had been spread equally, there might not have been enough in any one place to significantly alter the medical landscape. By saturating the breast cancer research space, perhaps, circumstances allowed for rapid, lifesaving advancement and a huge wave of awareness that in turn has led to better rates of early diagnosis, as well as taking away the stigma once associated with the cancer. And I have argued that giving awareness to any cancer is good for all cancers because, well, education is education. But how many people know that once October / Breast Month is over, we enter Lung Cancer Awareness Month in November? Granted, there are not enough months for every cancer to have one of its own, and in general I think that “awareness months” are a silly thing because we are so saturated by them.  But Lung Cancer Month is coming up with its own fabulously not-eye-catching color: clear.

To be honest, the marketing geniuses behind Lung Cancer Awareness did have a gold outline to their ribbons logo, since apparently they realized that something needed to indicate the actual image of a ribbon, though associated paraphenelia included things like an etched glass mug that looked like, well, a glass mug. Apparently the ribbon color is being updated this year to a pearlescent white, a marginally more visible choice, but still hard to compete with the bright splash of pink that fills every nook and cranny of October

A T-shirt with bronchial tree design for Cystic Fibrosis awareness.
Cystic Fibrosis T-shirt design from causeignitor.com

that isn’t otherwise orange or black. And lungs (much like the liver, bladder and colon) are arguably not as immediately marketable as boobs or tatas or whatever nickname the shapely mammary glands go by these days. No playful or arousing way to describe those breathers, either. Airbags? Oxygenation pouches? Respiratory facilitators? I guess a T-shirt with an outline of the lungs would be a good place to start, though I think Cystic Fibrosis has a head start there… Cystic Fibrosis T-shirt Designs have managed to provide a powerful image with a clear message. Much more so than the “clear” image that Lung Cancer Awareness sought with the initial concept of metaphorically clear lungs.

Awareness is a hugely important issue when it comes to funding. The government puts money where the public is going to notice it, favoring popular areas of research over those that appear to only serve a niche. Of course, when it comes to lung cancer, this is no niche. Let’s look at some facts provided by the American Society of Clinical Oncology:

“Lung cancer is the most common cause of cancer-related death in the world. In the United States alone, an estimated 228,190 new cases of lung cancer and 159,480 deaths from lung cancer will occur in 2013. These are alarming statistics when compared to the next four common causes of cancer-related deaths (colon, breast, pancreas, and prostate), which are estimated to account for 159,040 deaths combined.” American Cancer Society: Cancer Facts & Figures 2013. Available at www.cancer.org. Accessed August 13, 2013.

“Data from the National Cancer Institute (NCI), Department of Defense (DoD), and Centers for Disease Control and Prevention (CDC) reveal that the amount of money spent per death from cancer for the fiscal year 2012 was $17,835 for breast cancer, compared to $1,378 for lung cancer. This represents a greater than 10-fold increased spending per breast cancer death compared to each lung cancer death. A look at the total funding for these malignancies is just as alarming. Between 2008 and 2010, the NCI spent $1,803.3 million on breast cancer research compared to $776.4 million on lung cancer research.” NCI Office of Budget and Finance: 2012 Fact Book. Available at obf.cancer.gov. Accessed August 13, 2013.

What this translates to is a real need for better lung cancer awareness. There are Shine a Light events scheduled throughout November, but whether this really shines a light on the paucity of funding dedicated to lung cancer research remains to be seen. Had it not been for this support group meeting, I certainly would not have known about the lack of ribbon color and probably would have given little thought to the coming month’s special designation. I did get a postcard about the Shine a Light campaign, but that is the only exposure I noticed and it nearly went into the recycle bin because of its tastefully restrained graphic sensibility.

It didn’t take long to burn through the 90 minutes for which the group had the conference room reserved. Before we vacated, there was time for some personal stories, related to individual questions about treatments. Then a couple of us stuck around in the lobby to chat, supportively, about what was going on.

Life, it turns out, keeps on happening. Our issues are all complicated, our paths run their various courses and tend to take unexpected turns here and there. And while some still refer to themselves as “survivors” (a word I prefer not to use), the young woman who shares the adenocarcinoma designation with me said she prefers the term “thrive” over “survive.” I couldn’t have agreed with her more.

 


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