When you or someone you love is diagnosed with cancer it can be difficult to ask for help, or even to know what to ask for. Friends and family want to help, but they may hesitate out of a desire to honor your privacy or from confusion about what they should do. When Lisa Lefebvre was diagnosed with cancer for the second time, she realized that she needed help. She decided to create a website to make it easier for others to help her, and Mend Together (which is also known as Mend Together x Cancer) was born.
CONQUER: the patient voice met with Lisa, who is the Founder and CEO of Mend Together, to discuss the website and learn more about the mission she is on to help other patients find the support they need.
1. You coined yourself as a 2-time cancer “endurer” instead of a “survivor.” Please tell us how a simple change impacted your survivorship.
I personally have a hard time relating to the term “survivor,” partly because I am still “enduring” the side effects of surgeries and treatments. And my genetic risk factors mean that I will never be completely out of the woods, so I don’t feel I have “survived” this quite yet. Because I have been surprised by cancer diagnoses and scares several times in the past, I finally had to tell myself, “Stop being surprised when you get news. Expect that this will be an ongoing journey, and any developments will be less upsetting.”
2. What inspired you to establish Mend Together?
I simply wanted to make sure patients with cancer didn’t have the experiences that I had during cancer—not knowing how to field all the offers of help, and not knowing how to deal with the aftermath of treatments.
I will give you 2 examples of this. First, I was diagnosed at a somewhat young age, and I had no idea what kind of help I might need. I was often too shy to ask for help, even though people were constantly inquiring, “How can I help?” My 2 rescue dogs were accustomed to hour-long walks twice a day. I felt an obligation to keep this up given we lived in New York City, and it was important for their health and well-being to get regular exercise and stimulation. Yet, sometimes I was so sick from chemotherapy that I couldn’t make it more than a block or two. There was no way I was going to ask a friend to walk my dogs, yet in hindsight I know people would have been willing to help. Or they might have suggested, or chipped in, to hire a dogwalker, which for some reason never crossed my mind at the time.
Second, my diagnoses required 8 different surgeries, chemotherapy, and radiation protocols over 15 years. Each event resulted in symptoms of pain, fatigue, insomnia, and mental health challenges. I spent roughly $40,000 per year trying out various products and services to help me. I asked everyone I knew for ideas—oncologists, surgeons, integrative care physicians, nurse practitioners, physical therapists, dietitians, psychologists, survivors, the UPS guy…anyone. The result was 15 years’ worth of trial and error. A lot of that learning is now on the Mend Together website, as well as on our Facebook and Instagram feeds.
3. Mend Together offers unique ways to help patients after their treatments. Please tell us about the services that your organization provides.
We have created a new social platform to help friends, family, and colleagues rally around someone diagnosed with cancer.
The community journal helps ensure everyone is updated at the same time, because not everyone is comfortable sharing cancer information on Facebook or Instagram. The volunteer calendar makes it easy to coordinate offers of help.
Our gift registry enables patients (or a helper) to register for more than 300 healing products, services, and cash funds. Friends and family can choose a gift to send, contribute funds, volunteer their time, or simply send words of encouragement.
Patients can also shop our site for themselves, and many of our selections make excellent gifts.
4. On your website, you reference kintsukuroi. How is this Japanese art form the perfect metaphor for Mend Together?
Kintsukuroi or kintsugi is the art of repairing broken pottery with gold. Oftentimes, a repaired object is perceived to be more attractive than the original vessel, and it presents a history of past damage in a most beautiful way.
Many of us with cancer feel that our bodies and souls have been shattered by surgical scars, hair loss, loss of sexuality, or even having to face a foreshortened future. On the flip side, 60% to 90% of us experience what’s called “post-traumatic growth.” Kintsukuroi embodies the healing transformation that many of us experience after a cancer diagnosis.
5. How can CONQUER magazine’s readers, patients, survivors, and caregivers avail themselves of Mend Together’s services?
Our free tools help patients and caregivers connect with loved ones in a way that is easy and rewarding for everyone. Many times, our loved ones feel stuck on the sidelines, hoping for updates but not wanting to bother the patient or their family. Our community journal, calendar, and gift registry help facilitate an ongoing exchange of helpful information and support.
It’s easy to create a profile on Mend Together. If a patient isn’t feeling well enough to create a profile, or is too shy to do so, a helper or caregiver can make one for them.
Patients and survivors can purchase products for themselves in our “Shop” section, which is navigable by type of cancer, treatment, and/or symptoms. The shop contains many under-the-radar products, many of which are made by patients with cancer for patients with cancer.
The Mend Together shop is a great resource for unique and affordable gift sets that are more pragmatic than some of the cutesy, “rah-rah” gift baskets out there, whose contents often end up in the garbage right away.
Mend Together also provides additional support to patients in under-resourced cancer communities, including funds for transportation to and from treatments. I was heartbroken to learn from one of our hospital partners that the number 1 reason why patients with cancer don’t adhere to their radiation protocol is that they can’t afford bus fare to and from the hospital for weeks on end.
6. How can readers of CONQUER magazine support Mend Together?
We would be grateful for any help in spreading the word about our site www.mendtogether.com.
The more people are aware of these free resources, the more patients with cancer can get the social, emotional, physical, and financial support they need and deserve.
Watch: Rachel Swerdloff, SVP, Head of Partnerships & Operations, explains how Mend Together supports patients with cancer by helping people create registries for items and services that they may need during and after treatment.