"...I don't know who to turn to..."

A couple of weeks ago I sent out a letter asking people to make a donation to support the mission of the Colon Cancer Alliance.  The response has been gratifying and humbling.   Then a letter came that has stuck with me.  Here is part of what the letter said:

 “…you can find me to ask for money…but where were you when I had cancer as was so desperate I didn’t know where to turn?  From the chemo or radiation or the cancer I was out of my mind.  I desperately needed help but couldn’t find any.  I didn’t know where to turn.  Even still today as I suffer from the consequences of my rectal cancer I don’t know who to turn to.  I feel so alone.   I keep reading about these wonderful organizations who help people with cancer, yet my husband and I are alone.  I spend a great portion of my life crying these days, trying to figure out what to do next.”

I don’t know this person’s story.  They are in our records, so at some point they were in touch with our organization.  If they called our Help Line I am sure they were offered support and information, even the opportunity to be assigned a “buddy” with a similar diagnosis to talk to.  Did this person attend our conference or a seminar and never make further connections?  Did they hear about us and ask to be added to our newsletter list, but did nothing more?  Or—and this is what worries me most—did they try to reach us and we didn’t respond well enough?

The story speaks to the core of what we are trying to change.  Cancer is an isolating disease, and colorectal cancer is particularly isolating.  We work hard to get out this simple message:  You are not alone!  Clearly, we must do more to communicate this.  And we are working on it, in four key ways:

1.         Focus on customer service.  We must return calls quickly and be as responsive as possible to everyone who contacts us.  Our workload is heavy, and the demands are great, but this must be a priority.

2.         Accelerate the growth of a strong volunteer network.  CCA volunteers are a fantastic bunch, working at local health fairs, calling other patients, sharing information and ideas.  We need more and more volunteers to support people like the patient who wrote this letter, and we must do all we can to recruit, train, and encourage those volunteers.

3.         Expand the online community.  Earlier this year we created a special web site, www.mycrcconnections.org, that is a virtual community for people affected by colorectal cancer.  On this site, patients and caregivers connect with each other around specific issues or just the general idea of dealing with cancer.

4.         Undy 5000.  No-one with this diagnosis should ever feel alone!  The isolation comes, in part, from the fact that colorectal cancer has not received the same level of recognition as other diseases, despite the fact that every year as many people die of this cancer as die of breast cancer and AIDS combined.  In a few days, the first of a series of Undy 5000 5k run/walk events will take place.  In this event we will give out boxer shorts instead of t-shirts, and will encourage everyone to run in their boxers.  We do this for one reason—to generate attention and conversation.  Maybe through the Undy 5000 we can help more patients understand that others are going through their same experience.

Is this enough?  Of course not.  It’s never enough.  But it is a start. 

I am deeply grateful to this patient for articulating their story.  It is another reminder of who I work for, another bit of motivation to work harder, work smarter, be more compassionate, be more committed.

Comments

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