Infections and Informed Consent
Recently a friend of mine and I were talking about how to navigate relationships. It’s a conversation that more and more people are having, but to cancer patients, it’s a topic we’ve explored time and time again. How to keep each other safe?
My safety is my responsibility
I’ve been a cancer patient for eight years and in that time, I’ve come to realize that my safety is my responsibility. There are little things that I have done over the years to avoid infections. Some very mundane, like choosing bland white cotton undies rather than fancy man-made fibers in dye drenched colors. I wash dark-colored pants over and over again until the water runs clear before I wear them. I choose natural fabrics, often a little more expensive, but they're good quality which means my wardrobe is small but comfortable. I avoid anything tight and let my skin breathe.
I’ve taken a Food Safe course and carry my certificate in my wallet. It reminds me of how to avoid foodborne infections and cross contaminations. I’m very particular about leftovers, washing and cutting fruit and veggies, and I have separate cutting boards for meat. I’ve literally walked out of restaurants before ordering if I see anything amiss. I am the wallflower at potlucks, trying desperately not to insult anyone while avoiding the room temperature chicken wings. Food poisoning has landed me in an Urgent Care hospital and it's an ugly experience that I never want to repeat.
I live in a rainy part of the world and I have a dehumidifier in my home, chugging away daily, helping me to avoid any fungus that might find a place in a hidden corner. Its spores won’t make their way into my lungs! I am a bit of a neat freak and I will clean and dust and keep my laundry separate from the rest of the family.
Being clear and kind with my boundaries
Those are some of the things that I do at home that I’ve never really shared with anyone until now. But what happens when I go out the door? That’s what I was talking to my friend about. How do we navigate our relationships and keep each other safe?
Being clear and kind with my boundaries has been the root of my experience with leukemia. Not many people realize that for people like me a common cold can seemingly morph into raging influenza which can steer me towards pneumonia. From there a bacterial or fungal infection can take hold and before long IV antibiotics become a part of my reality. True story! I'm a conduit for infections.
For those of us on chemo, this is a really huge concern. My oncologist once told me that once we receive successful treatment, it's an infection that we need to diligently avoid.
While I want to be a part of life and enjoy my friends and family, while being productive at work, I have to ask questions and survey the situation I am in. Like a first aid attendant, I need to keep myself safe first if I am to be of aid to others. This means I need information and I need to make an informed choice. No one can do this for me. As an adult living with leukemia, I need to know what risks I’m taking and before making a choice, and in order to do so, I have to be sure my consent is informed. It’s a balancing act.
My right to say 'no' if I'm not comfortable
Informed consent means I have the right to say no. It’s not comfortable and it’s not that I want to let people down. It’s just that I need to prioritize my activity, do what is most important first, and choose from there. I rely on the people in my life to let me know what is happening in theirs so that I can make the most educated decision possible as to whether I should attend or cancel plans.
So if I refuse to taste a drink, or turn down that muffin that has been touched by many hands or give plenty of space rather than shake hands and hug I ask for understanding. When I change plans awkwardly at the last minute, although disappointed, I am thankful for the information I am given to make that informed choice. Missing that one event may give me the opportunity to make it to many, many more. Cheers!
What type of blood cancer are you or your loved one diagnosed with?