One of the many benefits of working with health professionals, in this case Dr Charles Campion-Smith who sits on our National Health Professionals Board, is that they often so freely share valuable information. Charles has introduced me to a smart phone (iphone and Android) app that may well be useful to advocates and patients.
The Cancer.net app is from the US but parts are very relevant to UK.
In particular the ‘Questions’ tab takes you to a page where someone can write questions (or select a number of provided ones) they want to ask – typically in a consultation.
The app then allows the anwsers to be recorded on the phone.
Audio taping consultations has been used successfully for some time but this is much less cumbersome and preparing questions together might be useful to advocate and patient.
I explored this app and came across a very interesting article written by Anita Mitchell which I know will be of great interest to our own advocates. I have now secured the relevant permissions to reprint this article in full and would like to thank Anita and the American Society of Clinical Oncology for allowing us to share this article.
Voices on Cancer is a Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Anita Mitchell was diagnosed with stage IV colon cancer in 2005. She is the cofounder of the Colon Cancer Stars of Washington State.
My advocacy story
I had not planned to become a colon cancer advocate. It is something that I just became. I suppose after everything that happened to me, I had to find meaning and purpose in my diagnosis.
I fell into advocacy in 2005, when I was diagnosed with stage IV colon cancer after just turning 41. The fact that my primary care doctor disregarded my symptoms and missed my diagnosis fueled my passion to become an advocate for prevention and a voice for those diagnosed at a young age. I was the third parent at my children’s school to be diagnosed before turning 50, which is the recommended screening age for colon cancer. So, I began educating families about screening and the symptoms of colon cancer. One of the first ways I did this was by starting an awareness day at my children’s school—I called it Dress in Blue Day. Years later, it became a national event!
I wanted to spread the word. After I learned how preventable my case was, I didn’t want this to happen to anyone else! But there were other things going on in my life as well. I was fighting for my life, trying to raise my 3 kids, and dealing with a crumbling marriage. It was a lot to balance.
Still, I started getting involved with some local cancer survivor programs. Then I began volunteering for LIVESTRONG, American Cancer Society, Colon Cancer Alliance, Fight Colorectal Cancer, and Gilda’s Club. Soon after, I found myself on committees for my hospital and state. I even posed for the Colondar for the Colon Club!Eventually, I started my own nonprofit, Colon Cancer Stars of Washington State, with the help of my Washington State Colon Cancer Task Force.
Advocacy is needed to give patients and survivors a voice when cancer becomes faceless. I clearly remember sitting at the ASCO Annual Meeting one year as a patient advocate. I was still on chemo, listening to the doctors talk about how a drug gives you maybe 1 extra month of life, wondering if the cost was worth it. I wanted to jump up and scream, “Of course it is!”
In the end, I got very lucky and was out of treatment after only 2 years. Even though I survived, I still lived from scan to scan and needed to find meaning in my life apart from my familly.
Handling advocacy burnout
When you are an advocate, you are smacked in the face with limited time and tons of things you want to do and achieve. You have to quickly learn to prioritize what is important. If you don’t, you can get burned out on advocacy.Here are some of the strategies I use to try to keep burnout away.
• Learning to say no. I quickly learned I would have to become comfortable saying no to different requests. This was not always an easy thing for me to do. I realized that I had to believe what I did was worth my energy and my time.
• Keeping balance. This is very hard for me, so I like to think of my life as a pie, and cancer is a slice of it. Sometimes I have a few slices, but if it becomes too many, I know I need to take a break. Cancer affects the whole family, so I had to be mindful that sometimes my children did not want to hear about colon cancer advocacy. For them, it was enough that they had almost lost their mother to it!
• Find support. I have learned to reach out for support from close friends who are cancer advocates. They understand the sadness and frustration of losing people to the disease because of the slow pace of science, politics, or lack of funding.
• Step away when you need it. Like they say during the airplane safety messages, “Put the oxygen mask on yourself first before helping others.” I have found this to be the case in cancer advocacy, especially when it comes to online help. These groups can be overwhelming at times, and sometimes you need to turn off the computer for a while. So when I need to, I step away for a bit and I do not let myself feel guilty about it.
• Seek what is meaningful and joyful in your advocacy. I try to slow down and analyze what brings me joy and a sense of meaning. I look for signs that I am going in the right direction. Sometimes it is a simple note saying, “Thank you, I got screened after I read your story in the paper” or “I slept all through the night for the first time since my diagnosis after I talked to you.” I once had someone say she kept my story in her pocket. You never really know how many people your story will touch or even save, but it is many more than you will ever know. So I choose to carry on!
Anita Mitchell Voices on Cancer