The Importance of Mentorship While Going Through Cancer Treatment—and How to Get or Be a Cancer Mentor
The week I was hospitalized and diagnosed with advanced ovarian cancer, I talked to my younger sister’s childhood best friend on the phone. She’d had breast cancer several years before, when she was in her early 30s. I had about a day to decide if I wanted to get a port implanted (a device that’s placed under the skin, usually in the upper right chest, through which chemotherapy is administered) or get chemo via IV into my veins, and I wanted to ask her advice.
Here’s what I remember from that conversation I had with her, as I was standing in the slice of space at the foot of the bed in my room on the infusion floor at the hospital: She’d gotten a port and was glad she did. She made chemo days into a ritual, where she got a green juice or smoothie before or after her infusions (I’d soon make chemo days a ritual, too, involving a stop at Starbucks before and a visit to the bagel shop afterward). She told me chemo wasn’t like those old ‘80s movies of women sprawled across the bathroom floor puking their guts out anymore. It was from her that I first heard the term “nutrient dense,” as in, the types of foods I should be eating during treatment. At home shortly after my hospital stay, a package from her arrived in the mail: The Cancer-Fighting Kitchen cookbook by Rebecca Katz.
Because I spoke to her, I was able to decide that yes, I wanted to get a port implanted, it was the right choice for me—and to feel good about that decision when I had that surgery a day or two later.
A few weeks later, I got a Facebook message from another woman I went to high school with who was around my age. I hadn’t known her personally when we were growing up, but I’m from a very small town so I knew who she was. A mutual friend of ours had told her about my cancer diagnosis after I’d posted about it on Facebook. She was a cervical cancer survivor and had just completed her treatment about three months earlier, and was reaching out to offer her support.
There were a few other young women cancer survivors I reached out to early in my diagnosis, but these two women were the ones I turned to most while I was undergoing treatment. They were huge sources of support—and they knew all the insider information.
My sister’s friend gave me the priceless piece of advice to always stay ahead of the nausea and take my anti-nausea medication when I felt the slightest hint of nausea coming on. Because if you waited too long to take the medication, it would be too late and you would never catch up. Due to her advice, I talked to my chemo nurse and she advised me to take my anti-nausea medication prophylactically the weeks I got the chemo drug that made me nauseous. (Always ask your medical team for the advice that’s right for you because what’s best could vary from person to person.)
My Dammit Cancer Doll keeping me company on my dresser during treatment.
The other friend knew all the ins and outs of managing the GI issues that come up during chemo—specifically, the painful constipation that can be caused by chemo and worsened by the anti-nausea medication. Having someone that wasn’t afraid to go into detail and share all her tips on this subject—plus normalize it and make me feel less alone in facing this particular challenge—was incredibly helpful. (Pro tip: Find a cancer friend who’s not afraid to talk sh*t!) A gift arrived in the mail from her, too—a Dammit Cancer Doll with a note explaining that she was sending it because someone had gifted her one of these dolls and she’d brought it with her to all her treatments.
There were times as I went through treatment when I only wanted to talk to another survivor, someone who’d been through what I was going through and knew what it felt like and exactly what to say. Like when I got my PET scan after my first nine-week round of chemo and was lying in bed waiting for the results to find out if the chemo was working and the tumors had shrunk enough for my surgeon to operate. Or leading up to my cancer debulking surgery when I was experiencing intense fear and anxiety, or when I felt surprisingly sad and adrift after treatment was over even though you expect to feel nothing but elation.
During all the hardest, darkest times, I called or texted these two women and they were always there for me, with a helpful piece of advice or just the right words when I needed them.
I didn’t refer to them or even think of them as my cancer mentors at the time, and we didn’t have a formal relationship like that or define it this way, but in essence, that’s what they were to me.
Once I finished treatment and was in remission, people started referring their newly diagnosed friends to me. Sometimes someone only wanted or needed to talk once, and other times it became more of an ongoing relationship. And in that way, I’ve now mentored a couple of women through their ovarian cancer diagnoses and treatments.
Being diagnosed with cancer at 43, I fall into this vacuum in the cancer support community: Young adult groups cut off at age 39, and general cancer groups tend to be comprised of mostly older attendees, usually in their 60s and up. For that and other reasons, I never found a support group I liked. I kept looking and looking but at one point during treatment, I realized that I’d actually created my own support group of sorts, made up of a handful of young women cancer survivors around my age, and particularly the two I grew up with. They lived in different parts of the country than I did, so all their support was virtual—over the phone or in texts or DMs—but two years and a global pandemic later and virtual communication is the norm now anyway.
I highly recommend finding this kind of one-on-one support from a survivor when you're newly diagnosed and going through treatment, and as a survivor, I highly recommend offering this type of support to others who need it and are early on in their diagnosis and treatment. On the surface it may seem like a one-sided relationship where the survivor gives and the one in active treatment receives all the benefit. But it’s actually a mutually beneficial, mutually rewarding relationship.
These two women helped me so much while I was going through treatment, and once I was able to, I was eager to pay it forward and help others in that same way, because I knew how helpful it was. It’s also so rewarding to be able to use your experiences to benefit others, especially others who are facing a serious health challenge like cancer. And lastly, helping other people and being there for them can get you out of your own head when you’re obsessing about worries, big or small.
Here are my suggestions for both survivors and those who are newly diagnosed looking for this kind of mentorship relationship.
If you’re a survivor and you want to BE a cancer mentor:
First of all, make sure you’re on solid footing with your own physical and mental health and in a good place to be able to give to another person. That doesn’t mean you’re never struggling with anything or going through any hard times, but you have to be able to consistently take care of yourself and your own needs before you offer your help to others.
If someone approaches you for your help, be clear on the boundaries that you need to have in place to be able to take care of your own health and well-being. You don’t necessarily need to explicitly state this out loud to the other person, but you have to know for yourself what you’re able to give and when. The two women who were my unofficial cancer mentors were always available either immediately or within a reasonable amount of time when I was going through something difficult and needed to talk. Similarly, I try to make myself pretty available if someone I am in touch with who’s in active treatment needs to talk. But if I’ve had a hard week and am exhausted, particularly if the other person is not in the middle of an urgent situation, I will let them know that I’m run down and need to take it easy but can be available in a few days. (While you may feel bad about not being able to be there for someone else 24/7, this can even have a positive impact on the mentee in that it models the behavior that self-care has to come first, especially for cancer patients and survivors.)
Once you’ve assessed your own capacity to give and decided that you are able to help another person, take the commitment seriously. That person is going through a really scary, vulnerable time and needs consistent and reliable people to lean on. Respond as quickly as possible when they reach out, don’t flake out on scheduled calls without warning or explanation, communicate clearly about your availability and limitations, and never ghost them.
Let friends know that you’d like to mentor other people going through cancer treatment. Be specific, if that matters to you: Do you only want to mentor other women, or people who had the same type of cancer that you did? In my case, my two main cancer mentors had different types of cancer than I did—one had breast cancer and the other had cervical cancer. But this was close enough to my own experience, in that they were both women’s cancers and one was a gynecologic cancer, and what was most important to me was to talk to women my own age. On the flip side, when I mentor other women, I primarily like to help those who’ve been diagnosed with ovarian cancer, because it’s a lot rarer than breast cancer and it can be harder to find and connect with people who’ve had the experience of being diagnosed with and going through treatment for ovarian cancer.
If you feel comfortable, you can also share on social media that you’d like to help others going through cancer treatment (again, be specific here if you’d like), and ask those with newly diagnosed friends to reach out to you. I think it’s helpful when the mutual friend (not the person who’s been diagnosed with cancer) reaches out first, to make sure you have the bandwidth for this at this time. That prevents the cancer survivor from being blindsided, and the cancer patient from being disappointed if the survivor isn’t available right now.
If you’re newly diagnosed or undergoing treatment and you want to FIND a cancer mentor:
Tell your friends you’d like to speak to someone who’s been through cancer treatment. (Again, be specific: Do you want to talk to a woman? Someone who had your same type of cancer? Someone around your age? Someone who lives in your area?) Ask if they know anyone they could connect you with.
Make sure this connection is coming through a mutual friend you know and trust and that your friend can vouch for the person taking on the “mentor” role. (You are going through a really hard and vulnerable time so you want to be sure that anyone you reach out to for support is going to be kind and compassionate.)
If you have a conversation with the survivor and they are not kind and compassionate or say something that makes you upset or uncomfortable, there’s no need to continue to be in touch with them. You can find someone else who will be able to provide the type of caring, compassionate support you need.
Evaluable their advice: It should be medically and scientifically sound! You do NOT want a cancer mentor who’s giving you off-the-wall alternative medical advice and eschewing or trashing Western medicine! Even when their advice is sound, always run it by your medical team anyway; as I mentioned earlier, what’s best for one person might not be for another and things can vary so much from person to person.
When you are done with active treatment and/or in a solid place with your own recovery, pay it forward and help someone else!
Did you have a cancer mentor when you were going through treatment? Or have you been a cancer mentor to someone else? Share your experience and tips in the comments!
