cancer support

The Language of Cancer

Cancer gives us a new vocabulary. Some words and phrases we embrace and some just do not resonate with us. We asked our Cervivor community to share a word or phrase that they find or found challenging to hear during and after cervical cancer treatment.

Just saying or writing the word ‘cancer’ hurts so much. ~ Marlene B

There was a resounding, collective group sigh at the phrase “new normal”. Nothing about cancer is normal and the ability to go back or to regain any sense of BC (before cancer) normalcy is completely unattainable. Treatment may end, surgery is done but we live with life-long physical and emotional side effects that you just do not ‘get over’. As Anne Z says, “Cancer is something I just have to deal with”.

“You don’t look sick”

This hosts a multitude of triggers for those living with both acute and chronic illness. It’s taken me years to learn how to unpack (to recognize why I react) and respond authentically to this one… yet can still really hurt emotionally. To everyone here, you are seen… even if the illness or situation is not. ~ Lori S

“You look good”

Although I know it comes from a good place, I hate when people say ‘you look good’ knowing I don’t look anything like I did before my third diagnosis. I am not sure why it bothers me so much but I always smile and say ‘thanks’. I also cannot stand when people say, ‘I don’t know how you do it’… like what was I suppose to do, give up? I wish they could just simply say, ‘I admire your strength’. ~ Jenn M

“You got this”

I think I prefer the statement, ‘I’ve got you’ as it comes across as more supportive. ~ Hilary B

“Preventable”

This word really stings for me. This is truly just my hang up because of my situation but I completely understand and agree with why it’s used now. For me though, it gives me chills because it makes me feel like if I would’ve done something different I wouldn’t have cancer. It just stings because the HPV vaccine wasn’t an option for me (I’m too old) and I have had my screenings religiously every three years since I was 18. ~ Tammy S

“Only”

Like, it’s ‘only surgery’ or it’s ‘only stage __’. It can come from anyone but it especially stings when it comes from fellow Cervivors. This cancer is life changing, brutal and leaves us with awful after effects no matter the stage or treatments. It makes you feel like you’re viewed as a lesser cancer patient. ~ Elizabeth A

“Incurable”

I have put zero stock in this word since I first heard it. Fact is I’m living with cancer not dying from it and I have a lot of living left to do. ~ Christy C

“They lost their battle” or “They beat cancer”

I don’t think it’s a competition and no one wins or loses. I chose to say ‘I’m surviving cancer.’ ~ Carol L

I hate thinking about people losing… ~ Jessica S

When someone says this, it always makes me cringe. ~ Brooke W

“Move on”

Don’t you think I know that already? It’s a process that takes time to heal both physically and mentally. ~ Anna O

People who have maybe not gone through or cared for a loved one with cancer, often have well-intended but somewhat off-putting comments that many of us struggle to accept. We smile, accepting these ill-fitting words, as we know they come from a place of kindness and concern, but we hope that others can be more mindful when speaking to cancer patients and survivors. Or perhaps chose to say nothing and simply offer your hand to hold — this speaks volumes.

Chapter 2: Growing, Learning, and Thriving Through Cervivor

It seems so surreal to be celebrating another work anniversary with Cervivor. Another year of incredible awareness initiatives, advocacy, education, and outreach plus community support for cervical cancer and HPV-related cancer patients, survivors, and thrivers. If you’re new here, please take a moment and read my introductory blog “Hi, I’m Morgan!” and my “One Year At Cervivor Taught Me” reflection post to bring you up to speed.

I started my cancer journey at 24 years old at a time when I was just getting my footing in my adult life, in my career as a dental assistant, and setting myself up for a bright future ahead. But life has a funny way of placing a wrench right in the middle of those plans we all carefully curate. I wouldn’t face just one cervical cancer diagnosis, but I would be thrown into the arena once again to face a metastatic recurrence in my lungs. I spent the greater part of two years just trying to survive. It was a grave reminder of how truly precious our time is here.   

I’m now standing 8 years out from that initial diagnosis with 7 of them being declared with no evidence of disease. I’ve been reflecting on everything I’ve been through and what I’ve been able to accomplish since then: the end of treatment, starting a Bachelor’s program just two weeks after completing chemotherapy; volunteering as a Cervivor Ambassador and patient advocate for so many organizations in my home state and beyond; all the way to getting my own apartment again, graduating with a Master’s degree, and landing a position with the organization that strengthened my voice.   

Over the course of the last two years, I’ve been learning and defining my role as the Community Engagement Liaison, as a nonprofit professional, and as a patient advocate. It has been a whirlwind of emotions supporting our community, from celebration to the unexpected and inevitable hits – you know, the bad follow-up scans, unexpected treatment side effects, recurrences, and unbearable losses. Cervical cancer is not an easy cancer. There are all of these additional layers of trauma thrown into the mix and it can be hard to articulate everything to those who haven’t set foot in our shoes. But we try. It’s not until we’ve met someone who has been through it and can say, “I have been there,” and “You’ve got this!” that you truly feel heard, accepted, and safe. I know because it happened that way for me too. 

Through it all, we continue to support each other as a community and our mission continues to drive the work we do every single day. Part of that is making sure that no other patient or survivor feels alone like so many of us have. I am reminded of the day I was diagnosed with cervical cancer every time a new request comes into our Comfort Care & Compassion program. I replay what I felt and I put that energy into the love, support, and personalization of that package. 

I am also reminded of my own diagnosis when another woman posts in our private group to share that her cancer is back. It can be heavy to see that over and over again but it only drives my purpose as a community support even further. It empowers me to be brave for others and do important work by reaching out to those who provide care for our community members. In doing so, I’ve been able to build and nurture partnerships like the one with the University of Alabama Birmingham (UAB) and Dr. Christina Wilson. Together we came up with a sexual health and support bag for those going through internal radiation – a little privacy bag for dilators and a business card linking to our support resources here at Cervivor. To hear the feedback from real patients has been truly empowering that we’re doing something meaningful and impactful through this partnership.     

Every time a woman has her ‘ah-ha’ moment through one of our various programming events, it catapults me back to the moment I set foot into a Cervivor School for the very first time. Standing up and speaking at a Cervical Cancer Summit, Cervivor School, or HPV Survivors School, I am in shock and awe that I was in the attendees’ seats only a handful of years ago. It keeps me feeling humble but it’s a great reminder because we are often told just how important our stories are. There is so much truth in that statement because the sharing of our personal stories continues to grow in our outreach across the globe.

2023 is an opportunity to keep learning, growing, and experiencing new things as an individual, community, and organization. One of my favorite parts of this job is getting to know others and their stories – no matter where they’re at in life. To see the uplifting support firsthand from our community members and just how one little “You’ve got this” message isn’t so little at all. Those are the things that drive this community to be who we are today. We are Cervivor. 

I cannot wait to see the expansion of Cervivor, Inc.’s mission even more. It is simple yet impactful and effective: We share our stories to create the change we want to see in this world and in this lifetime. We want to see those who are impacted by cervical cancer to feel empowered and supported because no one should have to ever walk this journey alone.

I know I want cervical cancer to be a thing of the past for our upcoming generations and I believe we can do this. I love to get to know others and the work they are doing in the cervical cancer and HPV-related cancer space! Connect with me on LinkedIn or send Team Cervivor an email at [email protected].

Morgan Newman, MSW, Outside of her Community Engagement Liaison position at Cervivor, you can find Morgan nurturing her relationships with local community partner organizations like the American Cancer Society Cancer Action Network (ACSCAN), the Iowa Cancer Consortium, and serving as a board member for Above and Beyond Cancer. Learn more about Morgan at Cervivor.org.