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November blog

TBYL

What a wonderful night! Jane Bayley and I, along with others from the Think About Your Life team, attended the HSJ Awards in the UK! Think About Your Life was shortlisted for the Managing Long Term Conditions award. We essentially came in second with a "Highly Commended" for our work.  

This was such an honor to be recognized for the website and the impact it makes in people's lives. Jane has been blogging her journey with cancer through using the tools available on the website, www.thinkaboutyourlife.org. Please take time to read about her journey. It is powerful stuff. Read Jane's Blog. The purpose of the website is to help people in a kind of do-it-yourself approach. The recognition from a national perspective from HSJ and to see the tools making such an impact for Jane shows me we are on the right track. 

At a recent conference in California, a woman named Linda shared that she and her sister sat down and used the website together - starting at the 'New Normal' phase.  Linda is the primary caregiver for her sister. Linda learned how much her sister has been keeping inside about her fears. It helped her sister to talk through her fears and hopes for the future and brought the two closer.    

This month we started work on a Survivorship Plan that incorporates the medical care plan aspect with a person centered approach at looking at survivorship. We are designing this and will have it as a free download on the website in the spring. 

To accompany the Survivorship Plan, there will be a workbook available to use based on the website. We have listened to requests for having a paper version of the tools on the website. The workbook is designed to be used as part of support group sessions, 1:1 with a health professional or on your own. It will also be available as a download on the website. 

I have embraced the power of twitter! We are posting regularly - follow us at: http://twitter.com/#!/thnkabtyourlife

 

One Page Profiles - share what is most important about who you are right now and the support you need.

Do you every wish your doctor or your nurse knew more about you as a person? Think about them rushing around busy helping everyone and YOU.  What would happen if, in a few seconds, they could know a little about you and what they need to do to support you?  It could help them provide better care.

Use the one page profile to share what is most important about who you are right now and support you need. 

During the treatment phase you focused on getting finished with treatment and beating cancer! The one page profile used during treatment, captures the right now of what is important to you about treatment, how to have more good days. 

Please click the blue links or the one page profile picture below for a pdf copy.

OPP pic

Think if you could have tips the chemo nurses needed to know about how to best help you....."don't show me the needle" or "realise I am terrified - make me laugh and this will go better for both of us!"

The one page profile pulls together a lot of information that is really helpful for everyone to have that is with you on the cancer journey: family, friends, nurses, doctors, and possibly co-workers. It may also help to have copies of this to email out, post on your blog or hand to people as an update of your journey without you having to retell your story over and over.

The one page profile  has been a really simple form to share what has been important to people during treatment and the specific support that individuals have needed from husbands, parents and closest friends. 

Tips:

Think about the most important things people need to know about you: write down these items. You can come back to this information and add to it and edit it throughout your experience as some of it will change as time goes on.

 

For more information on using person centred thinking tools and how they can help you with your journey please go to our website.

                               

                                http://www.thinkaboutyourlife.org/.

 

 

Using the Good day/Bad day tool to gain more good days.........

Think about your Life offer ways for you to think about your experiences and take action. On our website www.thinkaboutyourlife.org you can access all the tools including Good day - Bad day, and save your completed tools to your computer or print them. By saving the tool templates, you will be creating a record of your experiences.

 

Coping with health problems is different for everyone. So looking at what happens on good days and bad days can help to work towards having more good days. Doctors, family and friends can then use this information to help you.

Each stage of your journey can trigger changes in your life - how you feel about yourself, working might be difficult, routines get upset and focusing on getting through one single day might be all you can handle. These changes alone are enough to make most people have a bad day or two.

By writing your thoughts and feelings side by side, patterns emerge and from there you can start to thik about how to have more good days as well as decrease or cope better with the bad days.

Thinking and writing about bad days can be difficult so it may help to talk to your partner, a good friend or your family.

Good Day

good da bad day picThink about a day (or part of a day) that was good. What happened? The following questions can help you think about those good days:

Who are you around?

Who do you talk to (not talk to)?

What do you do?

When do you smile?

Do you get exercise?

What are your routines?

What helps you cope or make the waiting tolerable?

Bad Day

Think about a day (or part of a day) that was pretty bad. What happened on that bad day? The following questions can help you think about those bad days:

What happens on a bad day?

What did you not get to do?

What did you do that you would rather not have done?

Did you get enough sleep?

Did you not eat right?

This is where you look for things that you can control. What is one step you can take towards addressing the thinking you have just done? For example, send an email of your good day/bad day to a close friend or relative so they will know what is going on or call your Doctor to get an appointment.

 

For more information on using the tools and how they can help you with your journey please go to our website.

                                 

                                   http://www.thinkaboutyourlife.org/.

 

 

Kirk's Hopes and Fears

Kirk's story starts in 2002, when he was first diagnosed with diabetes. This has lead to him to seek advice and care from a team of neurologists due to the pain in his legs, leaving him unable to walk. He was diagnosed with Diabetic Amyotrophy and living with pain daily.  

 

Kirk has used the tools available on the www.thinkaboutyourlife.org to help him deal with this journey.

 

Kirk has used the hopes and fears tool to communicate how he is feeling and help him to structure the thoughts he has on his illness.

 

 

Kirks hope and fears

http://www.thinkaboutyourlife.org/

 

Elizabeth's Good/Bad Days

IElizabethn October 2001 at the age of 30, Elizabeth was diagnosed with invasive breast cancer (stage IIB). She used the Good Day/Bad Day exercise to process her feelings and just "get a grip" Elizabeth 1on what was happening to her. From making this simple list, Elizabeth could tell people how to help and figure out how to have more good days!

 

 

Good Day

Bad Day

  • I can eat breakfast (and other meals) without worrying about throwing up
  • I have energy (days 18-21 of chemo cycle)
  • I feel like going to work
  • I have a new hat to wear that matches my outfit
  • Steve (my Husband) is with me all day
  • Get to hang out with good friends
  • Go shopping, eat out, indulge
  • Go to young survivors support group
  • Having a Mohawk hairstyle for 10 minutes

 

  • Dreading my next chemotherapy treatment. How sick can I be this time?
  • Being too sick to eat or drink
  • Worry about dying and have no answers that are comforting (this fear lasts for days 1-5 of my treatment cycle)
  • Alone at home is very scary for me
  • Having my doctor tell me I "failed" my first chemo treatment (I was admitted to the hospital for being so sick)
  • No energy
  • Co-workers telling me that of I think positive I won't get sick or feel bad while going through treatment
  • People visiting me because it makes them feel better (drains me)

 

 

http://www.thinkaboutyourlife.org/

 

The Mothers Day Classic

DebFor more than a decade, Australia's Mother's Day Classic fun run and walk has provided communities with a great way to celebrate Mother's Day and raise funds for breast cancer research.

This year Deb and Linda from HSA Australia joined in and were able to raise awareness around Think About Your Life.

"A group of us headed out to walk in The Mother's Day Classic wearing Think About Your Life t-shirts. As we walked we talked to people about the website & handed out post cards. Thanks to Linda Rowley for getting us organised, Amanda Jones for printing t-shirts, and of course, everyone who joined us this morning"

Deb Watson, HSA Australia

 

Linda

Linda had this to say "The Mothers Day Classic today was great! The Think About You Life team was small but efficient - and the eye catching T Shirts were a great way to gain exposure to the portion of 40,000 participants we saw! I really enjoyed meeting new people and hearing their stories whilst handing out the cards."

 

 

http://www.thinkaboutyourlife.org/

 

Goal Achieved!

tayl logoGoal Achieved! Thank you.

Thinkaboutyourlife.org is an international effort.   We have been sharing this website in a few places: US, UK, Australia and Canada.  Over the past few months more and more people using the website and have reached our goal of seeing 5000 people use the website. 

Please tell us about your experiences using the website by leaving a comment below or by emailing amanda@thinkaboutyourlife.org or posting on our facebook page.

Thinkaboutyourlife.org is an international website dedicated to helping people on a journey with cancer or a chonic health condition.  The practical tools on the website help people find their way, describe how they want to be supported and to figure out next steps.   

 

 http://www.thinkaboutyourlife.org/

Person Centred Patient Care is Needed

tayl logoBill shares his recent experience with his doctor. Bill's story shows us that we still have a journey ahead of us to change attitudes and practices within the health care system. 

 

"You are what your chronic health disease/syndrome/condition/intelligence quotient says"

 

 While I don't believe this, I keep getting reminded that much of the world still thinks this way.  My gastroenterologist (who I've seen for about 7 years) told me today I look great, try to keep from seeing him, and that we don't have to talk about transplants unless I do something stupid.  He then said remember it's day-by-day.  I should have known/expected what would be next.  He asked if I attended an AA meeting.  Nothing wrong with attending AA meetings, but that's not my particular health condition or health history.  Either he had me confused with someone else, has too big of a caseload, or I have never 'fessed up to my misbegotten youth. I was reminded how powerful is "we are people first, our disabilities come second."  I guess this is not a phrase often heard in the health care profession.

 

On an upbeat note, I heard a Kaiser radio ad that promoted listening to music every day as a part of a good health regime.  It also mentioned expanding your playlist and listening to something new.  Long live music as one of the better (and nonalcoholic) elixirs of life!"

 

Thanks Bill for sharing this experience.  Anyone have a similar experience? Or an idea on how to make interactions with health care professionals more person centered and respectful?

Leave a comment below.

 

www.thinkaboutyourlife.org

 

 

Think About Your Life in Australia

Think About Your Life in Australia - Update

linda oz picIt's Linda from Australia checking in again this month. The past couple of months have been exciting with lots happening on a number of fronts and slow but steady progress.

We have been working to develop a workbook to complement the TAYL website.  The aim of the workbook is to make the tools available to people who don't access the web.

The first draft is being revised at the moment, and it will be exciting to see it change and morph into the finalised version over the coming months.

We have registered a Think About Your Life team for the Mothers Day Classic in Melbourne.   The Mothers Day classic is a fundraising event for the National Breast Cancer foundation in Australia.  It is held annually on Mother's Day - the second Sunday in May.  You can walk or run a 4 kilometre (2.5 miles) or 8 kilometre (5 mile) track.  The event is held in the capital cities and some regional areas.  Last year, 100,000 people entered the event nationally.

Our aim is to promote Think About Your Life by wearing bright T shirts, and handing out information leaflets to people who are interested as we walk around the track.

This month, Deb and I also met with the National Breast Cancer Foundation representative to talk about promotional opportunities for Think About Your Life and links to other organisations.

I met with the local Women's Health Service, oncology nurse and palliative nurse about facilitating a workshop for people with cancer.  We are aiming to conduct the workshop during May/June.  At this stage we are sending out an Expression of Interest to gauge the interest from people in the local area.  It's exciting to see it all start to come together.

I have also completed the first day of the person centred planning training facilitated by Deb Watson and Sharon Kirsopp.  The day was fantastic, and has broadened my understanding and appreciation of the tools.  I can't wait for day 2 of the training, which is being held in a couple of week's time!

 

www.thinkaboutyourlife.org

 

Using the good day/bad day tool

juneblog1We are nearing our first anniversary of the Think About Your Life website being launched!  I continue to use the tools personally to look at my "new normal" in survivorship.  I recently completed my good day/bad day and determined some actions.  Since I am working full time again in an office, I have lost a bit of my balance between home and work life.  Also, the further you get away from your diagnosis it is easier to lose the feeling of urgency to stay healthy to avoid cancer. Below is my good day/bad day tool.  Intentionality with being healthy can be so difficult - we all know this.  It is about developing habits and saying that taking care of yourself is okay and important.  I have found this is easier to do when you are in the middle of cancer treatment.

Last yeFeb 11 ar when I attended the Young Breast Cancer Survivor Conference the director of the National Cancer Institute spoke about survivorship.  She said she had some good news and bad news.  The good news is as survivors we have some control (not total) in preventing cancer from recurring.  The bad news is we have to change our behavior and eat well, exercise, protect yourself from the sun and reduce stress.  Really nothing different from what any doctor tells all their patients.  Sigh…yeah actually that is all good news!  Just difficult to implement.  Part of my accountability to myself is putting together a simple next step plan to get healthier.  I have agreed to share this as part of the blog and reference my progress throughout 2011.  Public accountability helps me stay on track and get started! Always leave room for not being perfect  - with the outcome being real change in how I am treating myself!

 

www.thinkaboutyourlife.org