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Posts Tagged ‘relay for life’

The group that got together in October to do community advocacy and resource directory for local cancer patients and survivors is waiting for the rest of us survivors to keep moving along.

We’re having an informal breakfast meeting next week at the local cafe on Main Street at 8 a.m. We’ll talk about the goals: create a directory of local resources and insert it into the state directory; recruit volunteers who will be trained by ACS to be in (the hospital/ clinic) (other place?) two or three mornings a week to answer questions and provide resource information and materials; recruit volunteers ACS will train for Reach for Recovery; help two local groups raising funds for research and treatment coordinate their efforts to continue $ for research AND keep some $ in the local community to help patients with the expense of accessing treatments and appointments out of town.  Some survivors also want to start a support group.

Since we are 2 – 2.5 hours from the front range where radiation treatment centers and other resources are located, we need to have some funds available to help folks get there, and improve the prognosis for people who otherwise might just skip treatment, or have a mastectomy instead of lumpectomy so they don’t have to have radiation, and to get to other facilities, when needed, in addition to the one the local hospital has contracted with. 

This community has raised enormous sums for Relay for Life, but none of that money stays in the community as dollars a local organization can distribute when needed to access tests, treatment and other appointments.

We have a LOT of enthusiasm in this new blended community group, so we need to keep focused and moving forward.  In the meantime, working on this has meant some of us survivors have talked to each other more often, which is functioning as the foundation for a support group, I think.

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We’re having a meeting this Thursday to talk about what resources are available in our small town for cancer patients and survivors, and what we can do to raise money for some that aren’t accessible.

I’ve talked about my own struggle to find information when I was first diagnosed and heading toward treatment: Did people get chemo treatments in the local hospital? If not, where were the treatment centers? How far away were they? How did people get there?

What about radiation treatment centers? How did people get to them and home five days a week for five or six weeks?

Did people travel to the treatment centers each day, how did they afford that, did they feel well enough to drive themselves, and, if not, what were their other options? Were there places to stay, and programs to help with the cost? Did the public transportation (county express bus) go there, and how much did that cost? Were there programs to help with that expense?

How about support groups? Counselors experienced in working with cancer patients? Where did I find information on nutrition and supplements during treatment? What if I needed help in my home during treatment – who could I call?

I tried finding this information through my local hospital before my treatment. I was told there wasn’t any list or directory or one source for all of this information. A nurse eventually made several phone calls to gather information which she then passed along to me. I called all the hospitals in the little towns in this part of the state (the size of Massachusetts with the population of Boulder, Colorado), asked if there was a list or directory of local resources for cancer patients, and was met with the same response at each place: they were not even sure who to pass my call through to.

After my surgery, and after my radiation treatment, when I was back home and getting back to work, I went to the local hospital to get my blood work done and everyone who worked for the hospital and clinic facility was wearing a pink t-shirt for breast cancer awareness month. So I thought I’d do an experiment. I asked if they had a list of resources for breast cancer patients. They did not, and they were not sure to have me talk to. So much for pink shirt day.

Our little rural county with a total population of 10,000 in three small towns began hosting an American Cancer Society Relay for Life Event three years ago. The first year they raised over $60,000; the second year they raised over $70,000, and the third year they raised over $80,000. People who were heading up the event were related to cancer patients and survivors and they said some of the money was used to help patients with their transportation and lodging expenses when they had treatment.

It was like pulling teeth and I got treated like the enemy, but what I discovered was that none of the money raised in the Relay for Life stays in the community as cash dollars that are available to help people with the expenses of accessing treatment. Yet for the next relay in July, our local paper featured the story of a cancer survivor who said that ACS would have helped pay for her expenses to stay out of town during treatment, but she didn’t have to use their help because she stayed with family.

What is available is Road to Recovery, a program of volunteers who sign on to drive people to appointments but who are not reimbursed for their expenses. What is available for lodging is the reduced rate that ACS negotiates with some hotels near treatment centers. (As do the hospitals.)

A couple of weeks ago I actually had a representative from ACS call me to ask if I knew of any help for a woman who needed to get to an appointment out of town that week.

Local cancer survivors are meeting this week with representatives from American Cancer Society, their Relay for Life reps, and local organizations and other interested people to finally address this issue.

Where does the money we raise go? Is there any way to access it for treatment-related transportation and lodging costs? If not, is there another way we can continue to raise money for Relay for Life and raise money that we can keep in a local fund for this purpose? How about other local events? Can we expand the support for them in order to raise the money for treatment access?

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