Time… One syllable, one word, yet holds so much weight. We often feel that this term is infinite and never ending, however, once diagnosed with MBC, we realize that it’s finite. There’s an abrupt and uncertain end.
I am 31 years old, and have been living with MBC for over two and a half years. I have mets in my bones and brain. I have had the rug pulled out from under me, and due to this I have had to live in three month increments. Scan. Treat. Repeat. That’s my new “normal.” Truthfully, there’s nothing even remotely normal about living this way. Time suddenly bears such weight that it seems to determine how I live my life. The elusiveness of each day leaves me wanting more, and willing to tolerate many awful side effects from treatment, just to achieve one goal: more time.
Time is no longer viewed as “next month,” “next year,” “when I retire,” but rather minute by minute, hour by hour. We don’t contemplate the future as a far away, distant, almost expected notion that we will all achieve, but rather as an urgency and immediacy to get things done because we know far too well that the future isn’t a guarantee.
Life is inexplicably arduous, and yet astoundingly beautiful. You feel more…you love more deeply…and you truly only make time for what is important and worth your while. If your time is wasted on meaningless nothing, you feel a bit cheated, and try to frantically make up for it. It’s as though you live in this parallel universe, that only those who are going through this can truly appreciate the magnitude of.
My family, my friends, and my fellow metsters are whom I choose to spend, and focus my time on. The rubbish annoyances of gossip, of complaining about things that can be changed or modified are considered wasteful in my eyes. I refuse to throw my time or my energy into things that are so inherently minuscule that I simply smile and stop listening. My time is worth more than that, and those I love are worth more than that. Complaining about things we can change, about other people and how they choose to “do” life is really none of my business, nor do I want to dwell on it.[tr-shareit text=”Time is no longer viewed as “next month,” “next year,” “when I retire,” but rather minute by minute, hour by hour.” sites=”twitter,facebook,google” align=”center”]Time is no longer viewed as “next month,” “next year,” “when I retire,” but rather minute by minute, hour by hour.[/tr-shareit]
For myself, throwing my heart and soul into advocating for MBC is where I gain my strength to live this life. Losing the ability to have children…losing my career…losing essentially all control of my life forced me to narrow down my priorities to focus on the immediacy of what needs to be done if we ever want to render this a chronic disease. A group of us in Canada, afflicted with this disease, realized the unmet needs of this population and created Metastatic Breast Cancer Advocacy Canada (http://www.mbcac.ca) to address areas that we felt MBC patients were under-served in. Watching friends slowly slip away is indescribably hard. Actually it’s painfully sobering. That’s reality. Life slips away just as quickly as the days go by. Others move on, while we continue to live idly, frozen in our tracks because of our diagnosis.
If I were to give one piece of advice to someone who was newly diagnosed it would be: don’t stop living. In fact, go ten times harder. Eat the piece of cake, buy that purse, go out for that fancy dinner, or that trip you’ve been putting off till retirement. What is that, that we can’t find ourselves worthy enough to do those things NOW? Why must we wait for disease or until retirement to truly enjoy life. Oh right, because we are saving. When people tell my husband and I to save for that rainy day, we smile and respond: ” We’re in a torrential downpour.” What more needs to happen before we allow ourselves to enjoy right NOW??!! Do the things you love with those you love. For the majority of people, we seem to live to work, and our careers chalk up a good chunk of our lives. Work dictates when we allow ourselves to enjoy life. Trust me, I understand that we need an income to survive, but many will put work and their careers before enjoying the time they have with each other. I’m pretty certain people don’t lay around at the end of their lives thinking; “man I wish I would have taken that overtime shift.” In fact, that sounds so incredibly stupid, and yet that’s what we do.
Time is so precious and yet the vast majority of us waste it. We don’t recognize that time is scarce. Time is evolving, moving, and we can either choose to simply be a passenger and watch it pass us by, or we can seize it and not only enjoy it, but potentially change the landscape of not only our futures, but future generations to come. Those of us with MBC are trying to save ourselves and each other, and quite possibly you; the person reading this. I’ve never loved statistics, but cancer statistics are dire. 1/3 of women with early stage, “curable,” disease will metastasize at which point the disease will no longer be curable, and that’s not even considering de novo patients! That’s HUGE, and yet we continue to act as though it can’t happen to us, but rather only to other people. I was one of those “curable” patients when I was first diagnosed at 26, but that all changed after my metastatic recurrence. I don’t want others to have to recognize the urgency of living with stage IV that those of us currently going through it need to experience…we aren’t only trying to save our lives…we may very well be trying to save yours.