Mentors, Angels and Advisory Groups

I strongly believe that developing a friendship with a fellow patient or a mentor who has already completed their treatment can be very beneficial.

I met J at a post-op exercise class that our local cancer center provides to patients who have had a lumpectomy or mastectomy. J had a lumpectomy and I had a mastectomy and we would both receive chemotherapy and radiation as part of our treatment regimen. The post-op exercise class is designed to facilitate our recovery by: 

• Teaching simple exercises that will increase early mobility and improve function after surgery
• On-site demonstration of all exercises and handouts for at-home use
• Educating post-op mastectomy patients on techniques to avoid lymphedema
• Providing a group setting for the recovery process

J and I hit it off immediately during that class. In fact after class we walked out of the conference room and sat down at a set of chairs and coffee table where we continued to talk for almost an hour, finally exchanging phone numbers and email addresses so we could keep in touch. And, if you can believe it, she showed me her scar and I showed her mine before we left that day! (Let's hope the security cameras were not being monitored at that precise moment!) Eventually we learned that my nephew and her grandson were best friends, and had attended each others birthday parties; it is a small world at times.

J would learn she needed a second surgery to remove additional tissue and more lymph nodes. I continued to recover from my mastectomy, and had only had my left sentinel node removed and biopsied which came back clean meaning my cancer had not spread to any other of my lymph nodes. Therefore, I was a few steps ahead of J in the next phase of our treatment regimen, and I had more lymph nodes which meant there was less chance of my developing lymphedema.

I started chemotherapy first and invited J to visit me during my second treatment. I told her she could stay as little or as long as she wished, since at that time my treatments lasted 6 hours. I think having her visit me during one of my treatment to see it and having a chance to ask questions made her less anxious for her first treatment. I remember her husband thanked me for inviting her so I hope it offered them both comfort; for her to know what to expect and for him that she was less nervous on her first day! J and I coordinated our schedules as much as possible, both requesting chemo on Thursday's so we could visit. Radiation was not possible as she requested an early morning time to get it over with for the day, while I requested the last possible appointment they had so I could continue to work full-time. I would work then go to the clinic for radiation and then go straight home. 

As I recall my treatment I am thankful I was able to experience it with someone I trusted and respected. There were other survivors of course that I met throughout the many stages of my treatment who had gone through all or some of the same experiences (some more recent than others), and who offered their wisdom, but J and I went through this together. There is something special about the bond you form with a person experiencing a situation at the same time.

Now as I recall treatment, I find I want to offer my wisdom to others who are newly diagnosed and have a million questions. I signed up with Imerman Angels, an organization that offers one-on-one cancer support by matching mentors with newly diagnosed patients who request someone to talk with. I learned about Imerman Angels from another cancer survivor in the evening support group I attend. I'm not sure how we got on the topic, but one of the survivors mentioned she was matched with a woman through their organization and they kept in touch via phone and email. That night I looked them up online to learn more about their services. You can view their webpage at http://www.imermanangels.org/. I completed an online questionnaire and spoke with a caseworker, and I have been placed on their register to be matched with someone in a similar situation. They try very hard to match persons with similar experiences for the best results, so it may be one week, one month, or even one year before I am matched with someone seeking a mentor.

I have also been invited to participate on my local cancer center's advisory group as a cancer survivor. The advisory group has about 20 members who meet quarterly for two hours in the evening to discuss important topics to medical staff, patients and caregivers and to share what works well and suggest improvements. On October 28 the advisory group discussed the importance of research and the partnership with our local University and the value of specific studies to patients; the new in-patient cancer ward in the hospital which is scheduled to open December 2014 or January 2015; and the development of a patient medical history form that can be given to newly diagnosed patients as a way for the medical team to gain insight into the patient and their medical history. During the meeting I was about to mention the benefits of a mentor program when the director informed our group that a mentor program is nearly impossible for them to coordinate due to the privacy law HIPAA, the Health Insurance Portability and Accountability Act. Since it didn't sound like my local clinic could easily provide a mentor service I joined Imerman Angels and hope to meet another young woman recently diagnosed and answer her questions and give her a person to talk and ask questions when needed.

I am excited to serve as a mentor through Imerman Angels as well as serving as a survivor on the clinic advisory committee, and hope the information I share with others will offer them as much comfort as I received from the survivors I met throughout my treatment.