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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
Please take time to read about her journey. It is powerful
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
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
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
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.
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.
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.
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.
Think 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?
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
For more information on using the tools and how they can help
you with your journey please go to our website.
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
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" on 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!
For 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 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."
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 email@example.com
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.
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.
Think About Your Life in Australia - Update
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
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 year 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!