You are responsible for your health, your doctors are your partners in the fight, but not the ultimate decision maker.  Educate yourself as much as possible, and then make sure that oncologist is the right one for you. Has s/he said something that you disagree with or question?  SAY IT – out loud and right away.  This is not being disrespectful, this is you trying to learn all you can.  Do you feel uncomfortable with a decision s/he has made?  Second opinions are not shameful.  As a matter of fact, if you tell your onc  that you want a second opinion and they do anything other than say ‘of course, how can I help?’ – you need to find a new doc.

What do you wish you had known?

That what seems to be impossible, implausible, completely out your power suddenly becomes a requirement.  Yes, you will have pain beyond description.  You will be so sick you practically live in the bathroom (get a pillow and blanket, just leave it in there).  Exhaustion will be the only word you can use to describe yourself, but you know that is insufficient. But then somewhere, at some point, you realize that you are still there, doing it.  You still get up and tie your toddlers shoes, you still do the report for work, you still make dinner.  And little things become incandescently beautiful and worth noting; your daughters smile, the peaceful stillness of snowfall, the tiny moments that were previously overlooked now become day-changers. 

Where do you find support?

My faith, my family, my friends, my community.  I know that certain comforts can only from from my warrior sisters online at 2 am, for example (#bcsm is my lifeline).  Someone who understands the term ‘bone pain’ without having to explain what that means.  But I also know that my children, although small, are able to do a great deal to offer comfort when empowered and enabled to do so.  Churches are populated with seasoned professionals at home-cooked meals, fund-raising and overall love.  Let those ladies come on in and do what they do best; some of them have been doing it for over 70 years and know how to make it all happen (and leave everything spic and span afterwards!)

What is the most important advice you would give a new patient?

Find a community. If one doesn’t exist in your geographic location, get online and connect.  If you are unable to afford anything – medicine, communication tools, transportation, be very vocal.  There are groups willing to help, but your oncologist and nursing staff are very busy trying to save your life and can’t also take care of the other issues.  The resources are out there to help you, but you have to be your own advocate and get the things you need to help you as you.  And start saying yes to those who want to help-and be honest about your needs.  If you, for example, realize that you really just need a new mattress so you can have a proper rest after chemo and can’t afford it, tell people.  Allow the goodness of others to shine.

What concerns you most about the future?

The rampant ‘consumerism’ surrounding our disease; and the fact that the consumerism seems to completely avoid the very real needs of patients and their families.  Big box non-profits appear to focus only on women who proclaim themselves to be true fighters, implying that their health is comes solely on their iron will and fortitude (and, of course, women who fought cancer but are still picture-perfect.)  I am concerned about my children, and that this disease is laying in wait for them, while people dance at pink parties without actually investing in those in need.  

What advocacy work most interests you?

At the urging of friends and family, I have become a public health advocate and speaker. I am passionate about educating corporations/churches/groups/people about how to care for people who have cancer.  The treatment is a short-term (for many) part of the journey; the after effects last the rest of our lives.  Family care, pet care, financial difficultly, blatant work harassment, non-financial needs; just the basic information about how to care for someone who is going through or is on a catastrophic health situation.  I’ve spoken worldwide and to thousands of people, each time I feel that I’m able to be a vessel to help others – and it’s the most rewarding thing I’ve ever done.

Heidi Floyd is an author, cancer patient, speaker,blogger, advocate, wife and mom – not always in that order. Her work and passion is to provide assistance and compassion to families on a cancer journey, until the disease is eradicated. Find her on twitter and facebook.

This is the first in a monthly series of posts, shining the spotlight on a #BCSM community member. There are so many incredible people in the group – we can all learn from and inspire one another. Want to be profiled? Simply Contact Us!