"I don't know what to say" and "I don't know what to do" are common responses to a life-threatening diagnosis. Voices of Cancer is here to help.
Every cancer story is different, but there is one commonality: both patients and the people supporting them often struggle to properly articulate their wants and needs through particularly challenging and in many cases, uncharted territory. Lynda Wolters knows firsthand: she was diagnosed with stage 4 terminal mantle cell lymphoma in August of 2016.
Voices of Cancer offers a candid look into the world of a cancer patient, informed by Lynda’s own story and conversations had with dozens of patients weighing in on their needs, wants, and dislikes as they navigate the complex world of diagnosis, treatment, and beyond. With comprehensive and accessible insight from people who’ve been there, Voices of Cancer helps educate, dispel fears, and start positive conversations about what a cancer diagnosis truly means, while shining a light on how best to support a loved one on their own terms.
Audible (US):https://www.amazon.com/Voices-Cancer-What-Really-Want/dp/B0839PK3GJ/
Kindle (US):https://www.amazon.com/Voices-Cancer-What-Really-Want-ebook/dp/B07YLZKSTX/
Hardcopy (US):https://www.amazon.com/Voices-Cancer-What-Really-Want/dp/1645430391
Audible (UK):https://www.amazon.co.uk/Voices-Cancer-What-Really-Want/dp/B0839PGW1B/
Hardcopy (UK):https://www.amazon.co.uk/Voices-Cancer-What-Really-Want/dp/1645430391/
Book excerpt:
Through years of becoming a more sensitive
world, we are all learning how to communicate in a less derogatory
manner. This, however, has fallen short when it comes to how we
speak to people who have been given a devastating diagnosis. It is my
contention that there are still some areas that need work; speaking
of diagnoses is one of them.
Voices on Thoughtless Words
Be aware of some common irritating phrases.
“You look good, though.” While a seemingly harmless thing
to say, when the patient is going through treatment, they know they
look different or ill but certainly not “good,” at least in their eyes.
Therefore, this statement can often feel more like an attempt to placate
or avoid the obvious, which is not helpful. Rather than stating what
feels like a little white lie to make the person with the illness feel
better, it is more appreciated to hear something believable, such as,
“It’s good to see you. I can see you’re going through a lot right now,
and I am sure that is difficult for you.” This puts the person first, and
it is a respectful acknowledgment of the difference in appearance.
Vanity is not necessarily the issue here, but cancer changes
everything and we know it: we feel it, we see it. Our skin changes
tone, sometimes pale, ashen, yellow, or greenish. We get dark circles
under our eyes and blemishes, boils, rashes, and herpes zosters
(shingles) on our skin. We lose our hair, eyebrows, and eyelashes,
as well as nose hair and pubic hair. There is weight gain and loss,
atrophy of muscles, and once shapely bodies become misshapen
with flab and cellulite from lack of exercise. The shape of our faces
can change to a “moon face” due to steroids. Often, we have weird
ports and PICC lines, tubes, drains, and bags of fluid showing out
of our chest, neck, arms, and so on.
We patients see someone different looking back at us in the
mirror, and we know you see it too. It’s okay to be honest: we have
enough mystery in our lives with our treatment and body changes,
we don’t need our friends and family adding to that layer of unknown
with what feels like untruths.
“At least you got the good cancer.” This one just blows me
away, for many reasons. Before my diagnosis, while I was waiting
for my results, I actually prayed that I had an “easy” cancer. What
was I thinking? Is there such a thing? Regardless of the stage or the
type, cancer is terrifying and ominous, and it will haunt you for the
rest of your life. So, a good cancer? There is no such thing.
“I’m sorry.” This is a tough one, and I have been known to
Use it myself when I didn’t know what else to say. I am guessing
that is why it is used by others as well. It seems to be unwelcome,
however, because it is an easy catch-all phrase with no real meaning
behind it. A child uses, “I’m sorry” to get out of trouble regardless
of meaning it. “I’m sorry” is not an apology nor should it be used
when you don’t know what else to say—after all, my diagnosis is not
your fault and you didn’t do anything to be sorry about. Perhaps it
would fall easier on the ears if “I’m sorry” is followed by “you have
to go through this.”
“That’s life.” When my friend Mark, who is battling brain
cancer, told me this was one of his most-hated phrases after his
diagnosis, I had no words. Really, who would say that to a cancer
patient? I am thinking I would just walk away from that one and
regroup, as I am not sure the speaker would even deserve a response.
“Bless your heart.” This always makes me laugh because I can
hear my friends Susan and Anastasia, both of whom have cancer, say
this with a condescending twang: “Why, bless your heart, honey.”
(Imagine a hand on a hip and a downward tilt of the head, eyes
peering over the tops of glasses.) Perhaps we just take the blessing
and run with this one.
“Be strong.” Is there any other choice?
“You got this.” Yes, I do have this; I have cancer. Thank you for
reminding me, runs through my head every time someone says this
to me.
“Keep fighting.” Refer to the “Be strong” comment above.
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Lynda was born and raised in a tiny farming community of 400 in northern Idaho. She worked on the family farm, with her first job being picking rocks out of the fields and ultimately graduating up the ladder to driving a grain truck and combining during harvest. Following high school, Lynda continued her education in Las Vegas before she moved back home to Idaho to raise her three sons.
Lynda still resides in Idaho with her husband and their peekapoo, Max.
Lynda has worked in the legal field for 30+ years and enjoys ballroom and swing dancing, horseback riding, kayaking, and river rafting. She has a heart for people and enjoys regularly volunteering. She spends the bulk of her spare time reading and writing.
Lynda was diagnosed with terminal stage 4 Mantle Cell Lymphoma (MCL) in August 2016. She touts herself as being a thriving warrior of the disease.
Lynda has completed two books of nonfiction: Voices of Cancer, released in October 2019, and Voices of LGBTQ+, released in August 2020.
The Placeholder, Lynda’s debut novel, was released in November 2022.
Lynda has published the following articles: Navigating the Workplace with Chemo Brain, February 23, 2020, Elephants and Tea. and When Masks Weren’t Popular, March 24, 2020, Patient Power. She has spoken on several podcasts, been a guest on a local talk show regarding Voices of Cancer, and given interviews for other outlets and print.
Jane Brody wrote upVoices of Cancer in the New York Times, her article entitled What to Say to Someone with Cancer, on January 13, 2020, with a follow-up on January 20, 2020, entitled, When Life Throws You a Curveball, Embrace the New Normal.
The Chinese translation rights of Voices of Cancer have been purchased by a grant to offer the book to medical students in Tawain.
Lynda donates Voices of Cancerbooks and a portion of its proceeds to Epic Experience, a nonprofit camp for adult survivors and thrivers of cancer located in Colorado.
WEBSITE: https://www.lyndawolters.com/
Facebook: https://www.facebook.com/lynda.wolters24
Facebook page: https://www.facebook.com/lyndawolters1
Instagram: https://www.instagram.com/lyndawolters/
Twitter: https://twitter.com/Lynda_Wolters
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