Help Us...Help Them
I was thrown into a sea of unknowns, of firsts, and I found no guidance.
I don't know about you or your loved one, but my Stage IV diagnosis put me right there, in a sea of unknown waters. I had questions that I should be asking, but didn't even know to ask. When I did set out for answers, I found solid, vetted answers so elusive. The same was true when my family also sought answers and support.
This First Year Goal is So Important!
This is why we set a goal for our first year: to create Beginning|Stages Books for cancer fighters, for fighter's spouses, and fighter's children. These will be 30, 60, and 90 day guide books. The information contained within will be vetted by appropriate sources. The guide books are not meant to be "all the answers" but rather a way that points to dependable and accurate sources. We will ask and answer the questions that so many don't know to ask, until you're already in the midst of it, and everything feels like it is coming at you at warp speed!
We will not be giving medical advice, we leave that to the experts. But, in many ways, the medical community helps us answer some key non-medical questions. An example of this, is a question that is often asked of a cancer fighter soon after diagnosis by employers: How will this affect your job? Will you be able to still fulfill your job duties?
Obviously, those of us just diagnosed, having never gone through treatment, have no way to answer that question. What we want to provide are the answers necessary to begin a strong conversation with an employer that is honest, but advocates for initial flexibility and patience as everyone in the process is learning. The truth is every cancer journey is different, and no one responds to therapies and drugs the same way. We will provide a detailed answer that will help a fighter give solid answers to that question and similar questions.
We will also address very practical things, like what to expect in chemotherapy. If you were like me, I didn't know anything about it. I didn't know it was often done in an open room with other infusion patients. I didn't know it required me (not everyone) to continue to be connected to a pump that administered drugs for an additional 48 hours at home. And while hospitals and medical centers walk you through the basics, there is great practical advice that they don't often cover. Questions like: How should I dress for infusion? If I have a chest port, what kind of clothes give the easiest access?
One of the areas that was never discussed with me by anyone was the mental aspect of fighting cancer. We will be working with some of the top experts in the mental health space to address the importance of pursuing mental health avenues during your fight. This is not only true for cancer fighters, but also for their spouses and children.
So much of this battle will be fought on the mental health front. How we think affects how we do with all aspects of our treatment and fight. Learning to find community, to open up and let it out, to learning how important fun and activity are in the fight. Cancer fighters will fight one of the biggest battles in the area of isolation. We must learn how not to bring every friend and family member into this disease, but also how to find people and support from those who can be brought in and want to be brought in to walk with you. This is where HOPE becomes a focus and not the disease, treatment, or side effects.
We will allow experts to speak into each aspect of mental health in our guide books so that fighters, spouses, and children each are given comprehensive resources to turn to for strong mental health.
Other answers we will focus on are: Facing your fears. Giving the news to your family and resources/support for them. Ongoing communication with your spouse/loved ones. Organizing and keeping important records. Transportation and other cancer support services. Finding and evaluating cancer information. Being frequent and honest with your communication to your cancer team. How to battle fatigue. Potential changes and/or accommodations to make to your home. Changing Priorities. And many more...
Your monthly support will help us create each of these guide books and come alongside cancer fighters and their families! We're so freaking excited to create and provide these!