My last blog was about coping with severe pain and trying to advocate for myself. Now that the pain has lessened I am grateful to be healing. I believe there is a day soon where I will be back to regular life, I hope!

I know I am lucky that my pain is responding to treatment.

I had and still have moments of fear about the long term impact of my neck. A month ago I was afraid that every day would involve pain and limited mobility.  Everything seemed to make it worse: helping my son take a bath, driving, making coffee, typing, brushing my teeth. I couldn't do my share of the work around the house and couldn't care for Ben alone in the evening and morning. I started seeing my sick time at work dwindle. What would happen if I ran out of paid time off?  These thoughts and realities caused me to panic, get a tight chest, and have a stomach ache.

I still have moments of fear about the long term impact of my neck problems. When I have days of increased pain, I can feel the panic starting.  The way I help myself tamp down the panic is having a plan for the "what ifs". It is a contingency plan directly related to my fears.

I started thinking about what I could do to earn money that didn't involve lots of typing, driving, lifting or sitting?  I listed out all the people I know and put them into categories of work, friends, family, and people I access for services - stylist, doctors etc.... What connections might they have? Can my mom come over when I need help with Ben? Do I have friends that could help or that have teenagers looking for baby-sitting opportunities?

What was really helpful was listing out my most important relationships.  It was a good reminder about the friends and family I don't see every day.  I realized there were a lot of people I haven't talked to in a year or more; I still consider them close friends.  This prompted me to consider how to stay better connected to people.

On days when I feel fine, no tingling, numbness, or pain, I feel silly for panicking and spending time on my contingency plans. Yet, I gained so much comfort in mapping out my relationships - there are people who could help. The "what ifs" are covered or at least I have a plan.

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

For the last three weeks arm pain has been a constant companion. It seems from my MRI I have some discs pushing on nerves in my neck that makes my arm hurt. The pain ranges from irritating to making it impossible to think about anything else but PAIN. Of course I started using our tools on the website once I realized the pain wasn't going away anytime soon.

I am determined to be an empowered patient. I expect to work in partnership with my doctors. Well, I have learned yet again, that this isn't the perspective of some physicians. My primary care doctor is marvelous and she is my "safe haven" - she listens, she "gets it" and acts on what I tell her. We develop a plan together.

A couple weeks ago, I wrote up some notes to share with my pain management doctor about my pain, and used the hopes and fears tool. I was struggling to work full days and also have some energy left for my family in the evenings and mornings. I can sit at a computer for five minutes before my arm is pulsing in pain. Once it flares, it doesn't stop for hours - this is exhausting, depressing, makes me feel powerless…you know all that stuff!!

I asked for 1) tips to cope with pain, 2) asked about working 6 hours a day to have a little down time to recover and 3) if there was anything I could be doing to minimize the pain. Take into consideration, I am asking her these questions in a pain level of 8, doing deep breathing just to cope and think. I was surprised at her responses.

Her responses to questions:

1)   Tips to cope = "Maybe you need a referral for neurosurgeon if my treatments aren't helping."

2)   Working less than 8 hours = "You will get frozen shoulder or do more harm than good. I will not consider this as an option for you."

3)   What I can do to help myself(i.e. is there a way I can hold my body just right to stop the pain) = "Yes there is. We will get you signed up for physical therapy in a week or so."

I am certain my pain management doctor cares about people. However, I was shocked, hurt and even angered by her responses. After we meet, then it is time for my procedure, where she sticks a needle in my spine to help relieve pain. So, I wasn't eager to question her responses; I felt vulnerable.

This is not rational thinking on my part; it is survival thinking. I went to fight or flight in my mind. I heard her say she didn't really believe I was in pain or that the pain would have any impact on my quality of life that would require immediate answers.  I heard her blame me for not being strong enough to cope.

I am thankful that after my procedure in the recovery area, Rebecca, a nurse came and sat down next to me. She reviewed the page of information I had brought to my appointment and went through each point with me and offered understanding and support. Even though I was shaking with pain and anger, this helped. She gave me good support. She validated me as someone doing their best to cope with pain even though there are no "quick fixes" for chronic pain. I left the office with hope - which was all I was looking for.

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

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 . 

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. 

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/.

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

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?

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 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.

http://www.thinkaboutyourlife.org/

In 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!

http://www.thinkaboutyourlife.org/

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."

http://www.thinkaboutyourlife.org/

Goal 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/

Bill 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