08 June 2006

Support, Research, Ranting

For the past eight weeks or so I've been participating in a weekly telephone support group for people who are caregivers to someone suffering from pancreatic cancer. There are four of us plus a moderator in the group; the moderator is an oncology social worker.

It's been an interesting experience. In the time since GH's diagnosis, I've considered individual or group therapy at various times but have never followed through for a variety of reasons. As I think I mentioned in a previous posting, this group kind of fell into my lap, so I decided to go for it. Overall, I've been glad.

I'm the youngest member of the group by far, no surprise there. Because of that, the issues I bring to the table are somewhat different than the issues the others struggle with. We're all angry on some level, but my anger is about getting gypped out of something--someone--I just found and so dearly want to have in my life forever. We're all scared, but my fear is about how I'll handle being a single mom, not how I'll handle being on my own after years of having being part of a team. I'm balancing work, caregiving, and impending motherhood while the other members' primary focus is caregiving, all day every day. The other members are incredibly supportive of my issues as I (hope I) am of theirs and certainly the general emotions and issues--anger, fear, boundaries, stress management, disease management, etc.--are common to us all.

We had a great conversation two days ago about cancer research. There's not a lot of research done on pancreatic cancer. As a cancer that is most often detected late and at an advanced, incurable stage, I think that many researchers find it hard to get excited about. Most treatment is palliative rather than curative. Prolonging life by three months is a huge advance in pancreatic cancer. That kind of success is less exciting than a cure that saves thousands. Plus, thankfully, pancreatic cancer affects far fewer people than some other more "high-profile" diseases.

Additionally, family members of cancer patients will often become advocates for their loved one's cause. Family members work tirelessly to raise money for research and awareness. With pancreatic cancer, the time you get between diagnosis and death is often so short that you don't have time to become and advocate for anything except getting yourself and your loved one through each day. And then once you lose your loved one, you have your own grief to deal with, the chores of daily life to slog through, and it can be hard to focus efforts on cancer fundraising.

There are some very dedicated people doing pancreatic cancer research and advocacy. PanCan (www.pancan.org) is a nationwide organization that provides invaluable services to patients, their families, and the general public. There are also individual doctors, caregivers, and survivors who do everything they can to raise awareness, encourage research, and help people as much as they can.

To bring this back to the support group, it was nice to be able to say to people, "I get mad about all that breast cancer [lung cancer, colon cancer, etc.] research and publicity sometimes. Why is the person I love most in the world being neglected by the cancer research world at large?" I know that's not really a fair statement, and I don't want to detract from the amazing efforts that are made to cure any type of cancer. If you lose someone to cancer, it ultimately doesn't matter what kind it was. It just hurts and it sucks and it's pain and grief no matter how you slice it. But, goddammit, we have fewer options. We get fewer research dollars. Only three percent of people diagnosed with pancreatic cancer are alive five years later, the lowest five-year survival rate of any cancer. Why aren't more people trying to fix this?

All of us in the group were angry about this to various degrees. The shared anger was powerful and therapeutic. And it made me think. Early on, I did a fundraising walk for PanCan, but since then I've been focused on my own life and grateful that GH has beaten so many odds. I don't know when I'll find the time or energy to focus my anger in a more productive way, but I'm glad that Tuesday's group got me thinking about what I can do, how I can help.


OTRgirl said...

My husband is more interested in lung and pancreatic cancers than any of the others, and you're right, they are much less 'sexy' than the others. No one knows what the heck a pancreas is, really. And with lung cancer most people assume the victims 'deserve it' cause of smoking or living in LA (that was a bad joke for Weigook...) or whatever. It's really frustrating how much the money follows the trendy stuff.

What color ribbon should one wear for the pancreas?

BTW, I love that you have a cat called 'Dinner'. She sounds great.

Leggy said...

I can only imagine how gypped you feel- you have two beautiful little souls to take care of and the person you most want to share that with will get precious little time to do that. I'm sorry you have to go through this.

Yankee T said...

Sending positive pancreas thoughts your way. Sorry about it all.