In honor of national caregivers month we’ll be featuring posts about caregiving and caregiver stories. Today we welcome guest blogger, Bob Marcotte from You Mean, Besides the Cancer? who shares his perspective on being a caregiver for his wife, a cancer fighter.
In the beginning, when the word “cancer” was still echoing in my ears for the first time, I recall feeling lost, almost abandoned. We were being barraged with new, unsettling information by the minute, and while our trusted family doctor answered my myriad of questions in perfect honesty, she eroded my strength every time she said, “I don’t know.”
Life during the cancer diagnosis stage was anything but clear, but once the diagnosis was confirmed, it seemed as if the world turned into a house of mirrors. Not only would no one commit to a definitive answer to any question we asked, now we were told we were asking the wrong people. Wait, weren’t you the same people who just diagnosed the cancer? How can you stop knowing and suddenly go mute?
The last loving act from our family doctor was to send us to a cancer center we never knew existed, to a doctor we’d never met, to discuss things we knew nothing about, but feared.
This is the beginning of every cancer journey; a day vividly remembered by patients and caregivers alike as the day that life, and everything it once meant, changed forever.
I was the caregiver that day; my wife was the recipient of the diagnosis. That was four years ago, and if my present-self could go back in time and somehow tell my past-self about the meaningless suffering, the endless fatigue, the heroism, and yes, the joy we have experienced, my past-self would be dumbfounded.
I believe no words can fully express the cancer experience, even to myself.
But there are some thoughts that might make the early steps in your journey easier:
1 – No doctor will give you a definitive answer at the beginning stages of treatment. They see test results and have a sense of probabilities based upon their training and experience, but keep in mind that they bet your trust in them on each answer. They will not speculate unless you ask them to, and if you do ask, tell them you won’t “hold them to it.”
2 – If you are the caregiver, be brutally honest with the doctors. The situation they find themselves in often intimidates cancer patients, and they stop communicating. Tell the doctor what you saw, how you think your patient was feeling (and yes, your loved one is your patient, too). Some patients might get upset with this. Take the beating and move on. What you say in an appointment might be the most honest words the doctor gets to hear.
3 – EVERYONE is a part of the care team, from receptionists to pharmacy techs to surgeons. Treat them all with great respect. Show them that you value their help, and you will get the best they have to offer. Ironically, they don’t always remember my name, but they always remember my wife’s!
4 – If at all possible, build a network of support.
5 – Regarding #4, once the news of the diagnosis spreads through your family and friends, prepare to be hit by a wave of love and concern that is overwhelming. After it crests, step back and realize that these people want to do something to help, and often what they do doesn’t. Prepare to forgive. Yes, I know you already have so much on your plate that finding the energy to forgive seems like overkill, but hanging on to anger takes more. Your network will eventually boil itself down to a reliable core of helpers that will not add drama to your lives. That is your true network.
6 – Cancer treatment is not an example of democracy in action. Listen to everyone’s opinion, but the final decisions belong to you and your loved one. This WILL offend someone at some point, most likely a family member. See #5 about forgiveness, even though there is a chance it will not be reciprocal.
7 – Find Joy. I know those words seem to mock you right now, but I mean it. Whether your time together is long or short, don’t waste it on mourning until it’s time to mourn. The hardest thing about this already difficult job is keeping optimism. Without it, the weight is heavier and the suffering deeper. FIGHT to stay optimistic if you have to, but stay optimistic. It makes a difference.
Over time, the house of mirrors you once felt abandoned in will shatter, and on the other side you will see the people and the path you need. I promise you that there is love and support waiting, but even after four years of caregiving I cannot promise you’ll find the answers to all your questions.
Hold tight to hope and each other. I won’t lie to you, the days ahead of you are some of the most difficult, and meaningful, that you will ever live.
ABOUT THE BOOK
If everyone’s life is a book, and every day a page, then there are some days that deserve to be dog-eared. Your high school graduation, your wedding day, the birth of your children, and the day that your doctor discusses cancer with you for the first time.
If you are a caregiver, or about to be one, this book can hopefully shortcut the learning curve that sliced me to shreds.
This book is the story of my wife’s cancer and our journey through the medical system that eventually led us to one of the most cutting edge, lifesaving surgeries on earth. You can purchase it here for $1.99.
ABOUT THE AUTHOR
My name is Bob Marcotte and I am a musician, photographer, author and caregiver. Unlike my other job titles, the caregiver job title came without training and with little notice. Now, it’s the job title I am most proud of.
I live in California with my wife, Carole, who is still recovering from her massive surgeries. We are guarded and kept company by our two dogs and a cat, all rescued animals. After the Stanford medical miracle, perhaps Carole can be considered ‘rescued’, too.
You can contact Bob at firstname.lastname@example.org .