Website founder Amanda George describes her journey from cancer survivor to creating a resource for other sufferers of long term conditions
My own cancer journey began in 2001, when I was diagnosed with invasive ductal carcinoma. I celebrate another year as a cancer survivor on October 17 each year.
I learned very early on the significant impact that person-centred thinking has when you are dealing with diagnosis and treatment, and what is often a complete metamorphosis of what you know to be yourself and your day-to-day routine.
‘The tools are effective for people living with cancer or a chronic illness because the content is borne out of the real experiences of real people’
I used the person-centred thinking tool called good day, bad day almost daily during chemotherapy. The idea is that you break down into bullet points what things generally happen on a day where you feel OK or good, then in another column list the things that happen on a day when you feel bad. The aim being to help create more good days.
For me, some of the bad day column entries included being too sick to eat or drink, or finding my mind drifting to some of my worst fears about my disease. I was able to share the good day, bad day tool with my oncologist, which helped me to address and discuss some of these fears with him. I was also able to anticipate good days and live them to the fullest.
Through my own use of person-centred thinking, the Think About Your Life website came to be, in a very natural process. I collaborated with other cancer survivors to develop the content on the site, which I think it is for this reason that the tools are so empowering and effective for people living with cancer or a chronic illness: the content is borne out of the real experiences of real people.
Our highly commended recognition in the long-term conditions category of the HSJ Awards last year was something of a milestone for me and all of the team.
We hear so many stories from cancer survivors and chronic illness patients of how the tools are helping them on a day-to-day basis.
Research has shown us that people fare better if they can find a sense of control. Whether it is determining who will care for children or advocating with doctors to get help with pain and side-effects, exerting influence and solving problems help people through the experience. Using the person-centred thinking tools helps you to take care of yourself.
‘I used the tool to look at different scenarios during my chemotherapy and this made a huge difference’
Managing cancer or a long-term illness is all about the journey you go on as an individual − and the site and its tools have been on their own journey over the last year. Following our HSJ Awards nomination, our work has developed further and this month marks another milestone for us, with the launch of the Think About Your Life workbook.
Based on the Think About Your Life site, this resource is a compilation of practical tools specifically for people on the cancer journey.
As the global health landscape continues to change, with the healthcare system in the UK developing radically, our aim is for the person-centred thinking tools on the site and in the workbook to continue to provide much needed support and an alternative form of guidance for people managing cancer and long term conditions in their daily lives.
Case study: the communication chart tool
“When I was diagnosed with breast cancer aged 40, it was all very new territory for me. In the months after my initial diagnosis, a mastectomy, breast reconstruction surgery and chemotherapy all followed, and I began using the person-centred thinking tools on the Think About Your Life site.
“My family and friendships are what define my life, spending time with them and staying in contact is very important to me. Everyone is different and has different needs, but what was most important to me from diagnosis and throughout my breast cancer journey was making sure that the people around me could understand what my specific needs were so that they could help me to meet them.
“This is where the tool came in for me. Sometimes it could be so difficult to explain how I was feeling and what I wanted, but I used the tool to look at different scenarios during my chemotherapy and how I might react in each, and this made a huge difference.
“I made a list of times during my treatment when I knew I could need extra support. Using the ‘when I do this’ and ‘it means’ columns, I was able to clearly outline to those around me why I sometimes might be abrupt or short-tempered.
“Instead of having to find the words in the moment to explain to work colleagues, friends and family what they could do to support me in different situations, I was able to plan and structure this, so that they were prepared. It also made a real difference to me to know what I could expect from myself in different situations.”
Find out more about Think About Your Life at www.thinkaboutyourlife.org
Amanda George is founder of Think About your Life