Survivorship

 

Survivorship has become a hot topic in the cancer world.  So what exactly is it all about?  Survivorship is different for each individual cancer survivor.  For some, it is adjusting to the “new normal” once treatments are completed.  For others, it can mean getting back to life as it was before cancer. One important part of survivorship is coping with the diagnosis of cancer and all the changes that have occurred physically, emotionally, and/or spiritually.

I had a wonderful support system during my cancer journey.  There was always someone there with me.  I never had to face any of it alone.  My mother was my biggest support.  I know that I was fortunate and not everyone has this kind of support.  However, even though I had such great support, I still found difficulties in my transition from cancer patient to cancer survivor.  My journey changed my life completely. It affected every aspect of my life.  I was different physically, emotionally, and spiritually.  I had to find my “new normal”.  Since then, I have found journaling to be helpful.  I wish I had written down my thoughts and feelings and things that happened when they actually happened.  I recently attended a workshop at The Writer’s Colony at Dairy Hollow in Eureka Springs, AR.  The workshop was titled “Survivors Getting Stronger”.  I had the privilege of spending the day with other survivors and sharing our stories with each other.  We laughed, we cried, and we wrote.  Below is a piece of what I wrote that day…

Bad Hair Day

I got up out of bed and headed for the shower. I had another full day of treatments. I was in the shower washing my hair, when I realized that my hair was starting to come out in my hands.  My heart sank and I felt the tears begin to stream down my cheeks.  There was so much hair falling out.  I couldn't stop myself from running my hands through my hair over and over again. I thought to myself, I'm going to be bald if I don't stop.  I knew this day was coming, so I was surprised at my emotional reaction.  To my surprise, when I got out of the shower and looked in the mirror, I wasn't bald. I couldn't even tell that my hair was coming out by looking, but I could sure feel it. My scalp hurt.  It felt like I had my hair up in a super tight ponytail all day and had just let it down, only a hundred times worse. I finished up in the bathroom and headed to the bedroom to get dressed. I was sitting on the bed trying to muster up the energy to get my clothes on, taking a shower had sucked up what little energy I had started the day with.  My mom got there to pick me up. She came in to my bedroom and began helping me dress. I reached up and touch my hair.  As I pulled my hand away from my head, the hair came with it.  My mom just looked at me and assured me that it would be ok.  She was so positive and encouraging. A few days later, we were once again heading to treatment.  I had a radiation treatment at 9 in the morning. It was late summer, so the mornings were humid but mild. We had the windows rolled down enjoying the morning breeze.  I caught a glimpse of something from the corner of my eye in the window.  I turned to see what it was.  I started yelling for my mom to stop the car as I frantically tried to get the window rolled up.  The car came to a stop and my mom was repeating “What's wrong? Are you ok?”  I calmed myself long enough to say, “My hair is blowing out the window!”  We just looked at each other for a moment and then we started to laugh.  We laughed and laughed until we were crying.  

Christy Scarrow, LSW

 

National Cancer Survivors Day® is coming up on June 2nd.  Christy Scarrow is a Licensed Social Worker and the Manager of Patient Services at Hope Cancer Resources and is a Cancer Survivor.

Why we do what we do...

It's rare, perhaps, to have a job where you are often told that what you do every day matters. And not just that it matters on a basic level, to your boss or your co-workers, but matters to individual people who are dealingwith one of the most overwhelming and frightening challenges they have ever faced in their lives.

At Hope Cancer Resources people tell us almost every day that they appreciate what we are doing or have done for them. Sometimes it is at a patient's first appointment when they say "It is so nice to know you are here if I need you." Sometimes it is when we've completed a prescription assistance application and received free medication, saving a patient hundreds of dollars a month, that they say "I don't know what I would have done without this help." About twice a month a patient will actually send a thank you card or call specifically to say thank you. We received a thank you card and a phone call on the same day recently... here are their stories...

"Elise" has been in treatment on and off for over six years for her ovarian cancer. She works when she can as an office assistant. One of our social workers met her during the summer of 2007 when Elise was going through chemotherapy yet again. She complained to one of Highland's Oncology staff about the tooth decay she had suffered as a side effect of her cancer, and was advised to contact us when she had completed her new round of treatment about possible help with dentures. In October 2008, she telephoned us and mailed in a completed application. We stayed in contact with her over the next couple of months while she was being evaluated for further treatments. During that time, we encouraged her to use the community clinic to arrange for free extractions, and to look into several other community resources for help. We then helped her find an affordable place to have dentures made, and advocated with the denture provider to allow her to make payments over the next 90 days on part of her bill. The rest of the amount was paid by Hope Cancer Resources and her church. The thank you card she sent said "Thank you for helping me get my smile back!"

"Mabel" was an active, insured 42-year-old non-smoker with non-small cell lung cancer when we met her in November 2007. She resisted our help at first, even though she was making regular 90-mile round trip drives to Northwest Arkansas for her treatments. One of our social workers made a point to say hello to her each time she saw her in the clinic, and eventually she had a chance to chat with Mabel and her mother as they waited for the doctor. She explained again the services Hope Cancer Resources could offer. Mabel and her mother were concerned about taking our financial support from someone who might "need it more", and were sure they wouldn't qualify for any assistance. Our social worker told them that each patient's concerns are important, and that we look at each patient as an individual. They completed an application and we were able to help them with fuel costs for over two years as she fought the disease. We communicated primarily with Mabel's mom, and always encouraged her to take good care of herself too. We completed a CancerCare application and referred Mabel's two young children to CLIMB (a support group for children of cancer patients), but it was too far for them to drive to Springdale for the weekly meetings. Instead, we provided materials designed to help children cope with a parent's illness. Although Mabel lost her brave battle with cancer in 2009, her mother called to tell us that our help took a burden off of the family during a difficult time, and that we made a difference in their lives.

Whatever the prognosis or result of a cancer patient's diagnosis - the important thing for us is the impact we can have on the patients as they make the journey. The journey is so much better when you have some hope to keep you going.

Cancer: There Are No Others; Only Us

We all thought that Cancer was something that happened to "Other People". But now too many of us know that's not the case. We work with cancer patients in northwest Arkansas every day. We hear the stories of our patients, and we build our programs around them.

Post your experiences, challenges, and successes in the comments below. The more we are made aware of the needs of the people we serve, the better our assistance will be. Because it's NOT "Other People"... it's all of us.