My family and friends are wonderful. They are my cheerleaders and at the ready to spoil my kid, do my laundry, and even take my cat to the vet. But no one in my inner circle has been a cancer patient like me. My family and friends are currently grounded in worry. The question, “How are you feeling?” is loaded. Instead of answering honestly, I’m instead reassuring and managing all these well-meaning person’s fears and emotions.
To make it through cancerland you need support for all the the social, emotional and physical changes. My head was filled with questions like: Why does sex hurt now? How do I parent when I feel like crap? What is life on disability like?” WomanLab is a space for women to come and learn more about cancer and sex. This piece may feel a little out of left field, but I’m here to tell you that intimacy comes in different forms and right now, intimacy in my life is through an intricate and broad network of support. I have learned that what I need from a friend has changed as my cancer story transforms me. This might be something you’ve noticed for yourself too. Being friends with me currently requires medical knowledge and a dark sense of humor.
It’s not easy to make friends in the waiting room. Here is where I’ve found support (and, yes, real friends) in Cancerland.
All My Friends Wear Scrubs
The first place I found comfort and community after diagnosis was with my nurses. After we go through my long list of meds and rank my pain on a scale of 1-10, we chat about our kids’ Halloween costumes, mommy blogs and the best brand of ginger ale for nausea. My nurses are oncology vets and we cut straight past the, “How are you feeling?” obligatory dance straight to laughter and understanding. I may be alone in this feeling but one of the only places where I feel comfortable, where it’s ok to have cancer, is in clinic. Thank the gods for nurses!
Breaking Through Isolation
Clinic friends are great, but I’m not going to text my nurses at 2am. For that I have found Facebook groups specific to my cancer type, stage and age group. It takes time to find an active group that is well moderated but it’s worth it to have an army of cancer friends in your pocket. Literally. Online groups are great places to talk about mouth sores and toothpaste that won’t irritate those damn mouth sores as well as the latest treatment options.
I found my friend Nancy in one of these groups. We shared a sick sense of humor (her profile picture was her bald-self posing as BatBoy) and a similar cancer story. We ended up taking our friendship off the board and we texted daily about bad blood draws and living with our moms again in our 30’s.
Finding Success Stories
Caution: You may not find success stories in online groups. It’s a fact that people who seek out any kind of support group, need support. It’s important to see what your life might look like months and years in the future. Personally, I like knowing the best and worst case scenarios. I’m aiming for somewhere in the middle.
There are a plethora of articles, events and peer mentoring programs to illuminate life after treatment. My medical center hosts an event called Day of Survivorship that brings together previous patients, features moving speeches, cake and free parking. Each Fall across the nation you can fill your weekends with walks, runs and even regattas raising money and celebrating the fight against cancer. If you liked the pep rallies and tailgating in high school these may be a good fit for you.
A new development popping up all over is Cancer Mentoring and Peer Support programs. Organizations large and small are developing programs that virtually connect you with someone with a similar diagnosis and life, often a few years out of treatment. Depending on the support and training the mentor gets these can be excellent ways to connect with someone who has been there. Additionally, apps are also being created to fill this need like Instapeer and LivingWith.
IRL (In Real Life)
I found a fabulous community at my local Gilda’s Club through their events and parent’s with cancer support group. You may have a local Wellness House or Gilda’s club near you (click here to find a support group near you). They support men and women of all cancer types and most programs are free. It is a great place to find support and community.
I have also attended patient conferences and summits which are relatively new events that bring together patients, survivors and experts. Most conferences are focused on a specific type of cancer or treatment such as immunotherapy. Stupid Cancer has a huge conference for the young adult cancer community each year. See what is happening in your region.
A fabulous Chicago organization, Just Us Sisters Talking regularly brings together women in Chicago impacted by cancer to foster community and fun. A good place to find your own local group is through MeetUp. Many of these groups often get together at a local bar or coffee shop and brings together people with the shared experience of cancer looking for social support.
Lacuna Loft and other organizations offer support by providing new shared experiences for survivors and those in treatment. I have participated in online crafting classes and book clubs through Lacuna Loft which hosts online events and classes for young adults impacted by cancer. I found hope and fun in getting creative. Many of these organizations provide all the supplies and books you need (yes, really).
As a cancer patient you have amassed a whole bag of tricks that works for you. Do you swear by ginger mints or alcohol wipes to keep nausea at bay? Do you covet your silk pillowcase to keep you cool during night sweats? You are probably an expert and have a great deal to share. Giving back as a mentor or just as a voice in an online group is valuable. The opportunities to volunteer at charity events, walks and more are endless. Depending on where you are in your journey it can good way to start and make meaning of your cancer alongside of other survivors.
Giving back sustains me and has connected me to a network of people striving to make a better life for all of us facing cancer. My mission is to empower women as they navigate cancer with information and resources to address key issues that affect their quality of life. A major gap in care I faced was regaining intimacy and my sex life with my partner during and after my treatment. My libido was gone, sex hurt and I did not know where to find help or resources. My oncologists did not address this aspect of quality of life and I was not empowered to speak up since I thought it seemed trivial. Newsflash: it’s not. Through mere chance, I saw a flyer in a medical office for Dr. Lindau’s PRISM clinic and it’s through clinic I learned about WomanLab. I learned that all my symptoms were normal and, yes, even fixable. My eyes were opened to a wealth of information and resources about sexual function and cancer. I am now a proud member of the WomanLab Advisory Board. Through this role, I have a voice in shaping the care of women just like me and I get to do it alongside a team of formidable cancer survivors.
Buffet of Support
If you are overwhelmed and not sure where to start just pick one of these avenues to start. Over the last three years I have tried it all and find that the wide range of support options speaks to my needs. I, for one, need a variety of support and not one of these options alone has been sufficient. Each one has been an important piece of my support network buffet. I hope this list inspires you to check out a few items on the buffet.
Edited by Chenab Navalkha