Book Quote

Strongwoman

From rhe book entitled "Untamed" by Glennon Doyle
"What is better: uncomfortable truth or comfortable lies? Every untruth is an unkindness, even if it makes others comfortable."

This has resonated with me.  Think of the times we may have withheld truth because we are afraid of the impact it would have on our loved ones not thinking the impact it has on ourselves while we hold that truth.

Strongwoman

From the book entitled "Life is Messy" by Matthew Kelly:
"We cannot live without hope that things will change for the better, and we are not victims of our circumstances."
"There are some situations in life that need to be dealt with.  They require action. There are other things in life we simply need to wait out."

How these statements ring true for us all....at some point along our journey.  When we are first faced with something whether that be an initial diagnosis or treatment option, we feel like we are victims and the "why me" and "what next" and feelings of hopelessness and fear override our thoughts.  It is a normal process and we slowly come out of it as our own process emerges and lets us "see the light" or "find our way" into more calming times where the thought process will start to clear and make way for a brighter outlook.  We could very well see ourselves and paint ourselves as being the victims, in which a brief stop in this way of thinking is okay but to stay in it for long periods of time is unhealthy and requires some interventions to help us cope and get us through this phase. For some it is friend/family, others reading material, podcasts, support groups or medical intervention that help us.  All good sources and after that dark phase passes we are usually able to see more clearly and that what we went through has helped us grow in other ways.  
Definitely there are things that need to be dealt with and I recall doing some of those things to get them off my check list when I was encouraged to quit working altogether.  Things like finishing things up for the business, applying for Disability Tax Credit, CPP Disability, double checking things are all good with our wills, life insurance etc. Anything and everything that was tangible and achievable to me at the time is what I set forth to do because I could.  These helped to ease my mind for some reason.  The other things I had no control over were what the cancer was doing, what was next and how I was feeling.  I believe it is why we seek to control what we can and when we feel we can't that we feel stuck.  The cancer journey is a long haul and has many ups and downs. It can also bring with it a clarity of what matters most in our lives and what we possibly thought mattered, really doesn't and possibly doesn't fit anymore.  Some people don't 'fit' in my life anymore.  I don't dwell on it but embrace the ones that have been here and stood by me through it all.  It is those people who have been my anchor even when I have been at some of my worst emotionally, mentally and physically.  Those that can weather through that and be patient with us, those are our anchors. We can't rush things despite wanting to and I find sometimes along that waiting period, something else unfolds that we thought might not even be an option or opportunity.  These are the little nuggets I hold dear to.  Re-uniting with family and strengthening some of those forgotten or "life is too busy bonds" and holding dear the hugs and love they provide for us. The constant waiting for appts is tough, but one never knows what will come to us between that waiting time.  Be patient. Be kind. Be good to yourself. Above all, let your true self come through, those around you will adapt and be there the whole long while....just let them in. 

Strongwoman

I am reading the book given out Tuesday evening when our local Hospice put on an event. It is entitled:
"Hope for the Best, Plan for the Rest" by Dr. Sammy Winemaker and Dr. Tsien Seow
Here are some excerpts from it that may encourage you to pick the book up yourself and help you on your journey as well:

"A life changing illness meets at least one of these criteria: 
Chronic: in other words, it cannot be fully cured
Progressive: it will worsen over time
Life-limiting: it will shorten one's life

I have see patients feel tremendous obligation to stay positive or risk betraying the people supporting them.

Media headlines talk about celebrities "losing the battle to the disease."  The implicit messages are that if you die from a disease. you didn't fight hard enough, and that you had a choice in succumbing to the illness. The implications is that the patient alone has the power to win or lose the battle.

One of the main reasons more providers and patients don't talk about preparing for the rest is that they worry that talking about different what-if scenarios, including the possibility of death, will rob people of hope and make them depressed and sad. 

....excessive hopefulness can morph into toxic positivity.
It leads to denial and minimalization of reality while invalidating legitimate feelings such as grief or sadness.

Don't allow these pressures from well-intentioned friends or family, or in the doctor's office, to be barriers to you fully understanding your illness and where you are at in it.

Walking two roads is about exploring possibilities but not necessarily having a plan for every single possibility--just the one that seem more likely.

This requires an element of being brave and resourceful but allows you to be more resilient because you can stay a few steps ahead.

Hope naturally evolves over time when grounded in realistic information.  When hope is recalibrated in this way, you have more control and more choices. You can prepare for what is ahead.

Some will find it unsettling to walk two roads.  Each family is different.  Not everyone will be able to or want to walk two roads throughout the journey, and this might change at different times.

Usually, someone will naturally take charge and step into this role.  They will need to be brave in seeking realistic information that they may or may not share with the rest of the crew, depending on what each person wants to know.

Once you and your clinician have filled in the narrative around the beginning, middle and late chapters of your illness, it is important to understand how the storyline will affect your life.  This means considering how the expected physical changes at each stage might impact your every day life.

Zooming out allows us to be sure we're attending to what's important to this person on their life journey, given that bigger picture.

When you go through things like this, all your personalities (meaning your team around you) get exaggerated because everyone's emotions are heightened.,  It's an extreme life situation.  So all these things get dialed way up into overdrive.

Customizing your order is also about matching your overall treatment plans to what represents you as a person philosophically, spiritually, religiously and culturally.  

Expressing what you value now, in the big picture of your illness, is critical to helping your inner crew understand the motivation behind your decisions and preferences.  It is the context that will help them better appreciate your intentions and better support your decisions, even if they would not make the same ones.


I am half way through the book. There is also questions, thoughts and work sheets to help you through the book. It also gives helpful tips to discuss this type of thing with both your inner circle and your health care team.  Sometimes, we are not the one who is leading this and it is a caregiver.  It touches on the caregiver/inner crew perspective as well.  For after all, we are a team in this journey.  

Hope you find some of this useful and go seek out the book.  It is by books like this that we can hopefully change the way the medical society as a whole treats and looks at us when we have diseases such as this.  If they are uncomfortable with discussing it, someone has to as it is a reality in every one of our journeys.

This all ties in with our Teal Thursday chat 2 wks ago which was discussing quality vs quantity and what it means to you. 

Strongwoman