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Think About Your Life

Think About Your Life is a website for people to use on their cancer journey. Amanda George is the founder of Think About Your Life.

 

Next Steps....

juneblog1We have a goal - 5000 people use Thinkaboutyourlife.org by May 2011.

As of August, the website has been up for six months! So far we have had over 1000 different users of the website from several different countries. As a "maverick" website - meaning it isn't sponsored - we are pleased with this progress. All of this activity has been from word of mouth. Seventy-five percent of all users have found us by directly putting in our web address - so thanks very much for telling people about the website.

We will continue to add to the website and make changes to make it better! This summer has been spent working to expand website and share the thinkaboutyourlife.org with more people:

By the end of September the Journey with a Chronic Health Condition section of the website will be launched. The September blog will feature this section and the new tools we have added to the website - the good support for my health tool and decision making agreement tool.

Also, I realized we needed a "quick start guide" for the website. We received feedback that folks just want to jump in and get started using the site and needed instructions to do this. You can watch two videos that show you how to use the various features on the website here: getting started with thinkaboutyourlife.org and using My Tools on thinkaboutyourlife.org.

In addition, in the next year we will attend more conferences, write a monthly newsletter, and add a survivorship plan that can be downloaded from our site. Linda in Australia is doing some work to help get the word out about the website down under!

Thanks for sharing the website with lots of people. Keep sending feedback - amanda@thinkaboutyourlife.org.

If you would like any postcards to share please let me know!

august blog

Amanda George

Return to thinkaboutyourlife.org

New Normal

juneblog1This week I had the chance to spend time with two lovely women, Debbie and Rissa both cancer survivors and in the "new normal" stage of their journey with cancer. New normal is about figuring out what is next and how to live your life after treatment is over. Read more about new normal on the website.

Debbie is an amazing woman that has survived melanoma. She and I met at her house and I showed her how the thinkaboutyourlife.org website works. Quickly, she jumped in and starting using the tools on the site. I just sat back, sipped my coffee and waited to see if she had any questions. At one point I asked her how it was going and she said, "I need to walk, walk, walk! That's the one thing that would help all of the things that are not working and making me have bad days. I've said it out loud now; I have to do it." We laughed about that - one of those things that is so simple, totally in our control and that we are always reluctant to do - exercise! She did share her action plan with me for where she was going to walk and when she would start. I found this inspiring! To read about Debbie click here.

july blog photoLater that day, I met with Rissa at local coffee shop to think about what tools would be helpful to her on the website. She is a friend of mine I knew before she was diagnosed with brain cancer. She had surgery and now has scans every three months to ensure she is doing well. She is doing great!

Rissa shared some work she had done a few months ago on thinkaboutyourlife - the Dreams tool. To read about Rissa click here. When we looked at it, it was exciting to see all she has achieved towards her dreams! She and her husband, John are looking to simplify their life as their three children are grown and live on their own. The first step towards this was putting their house on the market. Also, they have lots of questions about options for health insurance, where they want to live next, employment, wondering what will happen if her brain cancer comes back and making sure she has a great support network where ever they live. She is really clear about what she wants for her life: to be near friends and family, help others, live her faith by helping others!

I appreciate Rissa and Debbie agreeing to spend time talking with me and sharing their lives to help others.

Amanda George

Using the tools on Think About Your Life for chronic health conditions

Over the past couple of months we have been working with ajuneblog1 small group people experiencing chronic health conditions and learning from their experiences with using the tools on the website. We are developing a new journey to capture the stages or the experience of having a chronic health condition. The group is sharing stories and examples about their journeys with chronic health conditions. We are identifying issues and tools that will be helpful to others with chronic health conditions to include on the website.

The following examples are from our group working on the next phase of thinkaboutaourlife.org: the journey with a chronic health condition.

Kirk and Jennifer

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Kirk and Jennifer have used several person centered thinking tools

found on the website over the past few years. Kirk is dealing with neuropathy that causes chronic and debilitating pain as a result of having type - 2 diabetes. Jennifer and Kirk developed an example of a health support profile that describes the specific supports Kirk needs to prevent health problems, deal with bad days and when he has severe pain. (click here to view).

Bill

Bill used a few of the tools on the website to think about his experience with a chronic illness. He says he found the tools helpful tobill photo get some of the things he had been thinking about down on paper. He has a diagnosis of chronic liver disease or cirrhosis. He used the following tools: hopes and fears, good day bad day, working /not working and developed a summary of what is important to him and support he needs in his Supporting Bill page." It is important to Bill to enjoy his family, work on projects that bring out his passion and hear live music often. He also lists the support he needs to be proactive in managing his health which will help him stay healthy and out of the hospital.

One of the things he struggles with and discusses in his examples is having medical professionals and others make assumptions about how he ended up with cirrhosis.Often people believe he damaged his liverjuneblog4 from abusing alcohol. He overheard one nurse telling another nurse his cirrhosis was from long term alcohol abuse - as if this was a fact written in his chart - neither the cause of the cirrhosis nor it being in his chart are accurate. It is difficult to deal with having a chronic health condition let alone dealing with how people react to you and treat you based on assumptions they make about you. Bill says he has periods of excellent health in the midst of dealing with his chronic liver disease!

Click here for more examples developed by Bill.

We plan to have the next phase of Think About Your Life designed and live later this year (hopefully in the not too distant future!). In the meantime, if you like use the current website to think about chronic health conditions and cancer. We would appreciate hearing any feedback or stories you have to share!

For additional examples of people with chronic and long term health conditions using person centered thinking tools click here found on the HSA website.
Amanda George

Return to thinkaboutyourlife.org

Resilience

Resilience: definition 2) "an ability to recover from or adjust easily to misfortune or change", from Merriam-Webster's Online Dictionary

To me, resilience means facing difficulties or adversity of being diagnosed with cancer or having a loved one diagnosed with cancer and trying to do something to make this event less of a negative impact on your life. The act of doing something gives you a sense of control or at least that you have control over something (even if just one thing) rather than being totally helpless in your situation. In my personal experience finding a bit of control lead to hope and hope lead to resilience.

We designed Think About Your Life to provide people with structured way to think through the adversity the are facing and to discover an action they can take (do something to find control).

Earlier this month, I received an email from a colleague about her experiences using the website in the discovery stage of the journey with cancer. She is supporting a friend who is going through tests and surgery to determine if she has cancer. While you are waiting to find out if you or a loved one has cancer, emotions can run from one extreme to the other. People have described the "waiting" experience to feel like torture. We can't change the process of diagnostic testing, but we can find ways to cope with the waiting. It is possible to identify what it is we need to do in order to get through the day. In the email from my colleague she explained how using the hopes and fears tool helped her sort out her feelings and face her fears - to do something while waiting and feel a sense of control.

Resilience is also experienced when the "adversity" isn't necessarily getting a cancer diagnosis, but finding our way forward after treatment. Linda lives in Australia and has graciously offered to share her one page profile.

She is in the new normal phase of her journey with cancer. Below, Linda shares her thoughts after considering what is important to her now and support she needs in her life right now, two years after finishing treatment for cancer.

"Completing the one page profile has made a huge difference to the way I view my life at the moment. Reflecting on what is important to me and my hopes and dreams was a timely reminder to focus on the positives, and where I am right now in life is exactly where I am meant to be.

During the last two years I have been on a mission to make a difference and get my business to the point where it is financially viable. I have slowly become caught-up in the web of work. I put pressure on myself to achieve extraordinary success, …to be living proof that you can not only "survive" the disease - you can achieve success and flourish.

I could almost see the valuable lessons I had learnt from my journey [with cancer] slipping through my fingers. Lessons of humility, compassion, gratitude, acceptance being present to each and every moment no longer spoke their messages loudly but remained a faint whisper in the background of my days.

Through using the one page profile all the lessons from my journey came flooding back with resounding clarity and I have felt more content and positive over the past few days and months. It has enabled me to approach my work and life differently, without the burden of pressure I put upon myself and reconnect with my sense of fun and spontaneity."

Thinking about Partnerships!

The experience of developing the Think About Your Life website has taught me the importance of two things.

1) I need to regularly share dreams with everyone in my network - once a dream is shared it is more likely to happen!

2) Patience and discipline are necessary to achieve the dream.

The dream for this month is developing partnerships in order to reach as many people as we can on a journey with cancer to find resilience and hope by using the website. Working together in partnership with cancer support organizations, cancer centers, and individuals is the way forward! Below there is a story of how one mother used the website and is planning to share it with others!

Patience and discipline are two aspects of my personality where I struggle. Ideas are easy, it is the follow through that is difficult. My hope is to share progress towards the dreams and vision of success for the website through this blog!

Learning from stories…

TmayblogThis example was developed by a mom thinking about her teenage son. She used the Hopes and Fears tool to consider issues for the future her son may deal with as the survivor of childhood cancer.

This mom is now has the opportunity to share the Thinkaboutyourlife website with a support group for children that have survived cancer and their families! I look forward to sharing the learning from this experience.

I recently had a chat with a woman about her experience with cancer. She is in the new normal stage of her journey and looking to figure out what is next in her life. While she was going through treatment she quit a job that she didn't like - it took her cancer experience to help her understand she can take time to find a job that is satisfying and gratifying. So, often we hear stories of cancer empowering people to make a change; to find more meaning in life and to give back to others. She is still searching for the paying job that fits with her vision of success for her life. I suggested she look at the dream section on the website to help her figure out her next steps. I look forward to sharing her story in future blogs!

We have also learned that the tools on the website help people with long term chronic illness. Jane graciously offered her example of thinking about her good days and bad days, hopes & fears and what's working/what's not working for dealing with colitis.

Amanda George

Our first month with Think About Your Life!

Taprilblog1As of March 26, 2010 Think About Your Life is one month old!

I have been comparing the launch of Think About Your Life to giving birth to another child!

The anticipation built over a year and a half and was finally launched at The 10th Annual Young Women Affected by Breast Cancer Conference in Atlanta, Georgia, February 26-28, 2010. What a great opportunity to celebrate our new website and share it with hundreds of young breast cancer survivors! Now I have another child to nurture and cherish!!!

Eleanor Attrill from the UK, Amanda Petersen and I were together!Taprilblog2 This was the first time the three of us had met face to face. Our work on the website was mostly over email and skype calls. Here we are after the first 12 hour day of exhibiting thinkaboutyourlife.org. We were excited to have over 60 people register for the website! Lots of connections were made with others exhibiting. We took the opportunity to sit down with women and provide and orientation to the website.Taprilblog3

Eleanor and I attended a session led by Julia Rowland, Director of the National Cancer Institute's Office of Cancer Survivorship in the US. Her message was very clear on survivorship planning is a standard of care for cancer treatment in the US! I spoke with her after and introduced Thinkaboutyourlife. She suggested we look at the resilience aspect of the tools on the website and find a researcTaprilblog4h partner.

This is my mission at the moment - to find a partner for doing a study on the tools and techniques on Think About Your Life provide cancer survivors with skills to be resilient?

In next blog we will share examples of how people are using tools and what we are learning about people's experiences with using the tools on their journey with cancer.

Welcome to the first Think About Your Life blog!

Thinkaboutyourlife.org was first discussed for 45 minutes in July of 2008 in Portland, Oregon by a few cancer survivors and a co-survivor. The preliminary "Journey Map" was hand drawn on a scrap piece of paper during that conversation! Here is just a bit of the drawing.

Needless to say, we had lots of help from a graphic designer and web developers to translate our ideas into the website we have launched.Tmarchblog1

The mission of Think About Your Life is for anyone on a journey with cancer:

To have tools for processing thoughts and feelings

Have a way to share this information with family, friends, medical professionals,

See positive change in how one is supported and treated as a result of being listened to

Ultimately, learn skills for finding resilience on the journey with cancer.

Someone asked me "Where does www.thinkaboutyourlife.org fit in the online resources for cancer?" What a great question. Excellent web resources already exist for finding the latest rTmarchblog2esearch, information on a particular kind of cancer or tell you where to get treatment.

Think About Your Life is different!

Communicating the support you need to your family, friends, co-workers and doctors is essential during your journey with cancer. The tools structure your thinking to help you reach next steps or action. These tools can be added to your blog, website, or linked to facebook.

We hope you find Think About Your Life useful and helpful on your journey with cancer.