Talk About Cancer

Babz walked us through how he reacted when he first got his diagnosis and how he quickly realized that dealing with cancer was mostly a mental game.

You can check out Babz's Community Interest Company Freshrb, which uses video production to highlight marginalized health issues.

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at [email protected]. 

Thank you for listening!

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My reflections on the conversation:

Babz mentioned the idea of “fast-forwarding your life” a few times during our discussion, and I thought it’s a pretty succinct way to describe a critical part of people’s experience with cancer because in an instant, a cancer diagnosis forces you to answer all the major life questions you haven’t yet answered with nearly no time to thoughtfully understand the issue and think through all the options and potential outcomes. Too many have had to deal with lasting consequences because they were either not fully informed, or not informed at all. 

I also thought it was very interesting for Babz to share that it wouldn’t have made a big difference if his medical team was more direct in their communication while Babz was waiting for his diagnosis. I know it would have driven me crazy to have to wait six months to get a confirmation and all the while experiencing strange symptoms. But that’s also what I love about making this podcast, is that it challenges my assumption about other’s experiences and perspectives!

I’m embarrassed to say that I don’t know anything about Nigerian culture even though I lived in NYC for 7 years and it has one of the largest Nigerian populations in the US. But it was so interesting to hear about the similarities between the Nigerian and the Chinese cultures, such as not talking about illnesses and being suspicious about non-traditional careers!

Sue gave us a glimpse into the struggles of caring for a loved one who is fully dependent on her and how in an extreme situation like this, self-care may just mean grabbing a few Oreos.

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at [email protected]. 

Thank you for listening!

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My reflections on the conversation:

A big “thank you” to Sue for giving me a precious hour from her day to share her caregiving experience with us. Her situation with her husband is pretty extreme but there were actually many elements I could connect with, such as having a very short horizon and only being able to focus on getting through each task at hand or having a sense of being in a “secret society” where your own life seems so far away from “normal” that you feel like an outsider. 

I know Sue reminded us to not try to be superwoman or superman, but I have to say, she comes pretty close to it in my book. Navigating the bureaucratic healthcare system with the ombudsman’s office is not a walk in the park, let alone for someone who is dealing with the emotional, financial, and logistical challenges of becoming a full-time caregiver. She also talked about the importance of making therapy work for her and not accepting services that weren’t effective. Rather than giving up, she managed to tackle each of these hurdles one at a time. It’s an incredible example of how resilient we can be when we need to care for the people we love. 

Tara talked about the multiple transformations she has had to go through: from being a caretaker to survivor to thriver, and from natural ways of healing to eventually facing her fears of chemotherapy.

You can find Tara's bestseller book Grace, Grit, and Gratitude on Amazon and connect with her on Instagram @taracoyote.

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at [email protected]. 

Thank you for listening!

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My reflections on the conversation:

Tara is the only person I’ve spoken with to date who has said “thank you” to chemo. It’s an incredible statement, especially because she’s had such a traumatic experience with her friend’s chemo treatment. It’s also a powerful example of her message to us - which is to find beauty in the path. Rather than focusing on the incredibly challenging parts of her cancer journey, she’s grateful to be alive and appreciative of the transformations the experience has brought her. As she called it - shining the diamonds of our souls.

Also, I had a light bulb moment when Tara was talking about being a caretaker for her friend Deb. Tara helped me understand something I didn’t back when I spoke with Kunal in episode 22 - that it was a privilege to take care of a loved one. But Tara’s explanation of her experience as her friend’s caretaker made sense to me - that to show up for someone when they are so broken down is humbling and makes you understand how precious life is. Now I understand why Kunal referred to the caregiving experience as a privilege. 

Shoni gets vulnerable and candid about her mom’s and her own experience with cancer and why her voice as a Black woman, matters.

You can connect with Shoni on Instagram @brsuga and learn more about For the Breast of Us on their website.

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at [email protected]. 

Thank you for listening!

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My reflections on the conversation:

After our recording, I thought a lot about Shoni’s experience with the receptionist at the oncologist’s office. It’s the kind of experience that is so familiar to those of us who have had to navigate the healthcare system to get care for complex medical conditions. But it is even more stressful when you know that by speaking up, you will be labeled and dismissed with a negative stereotype, like the “angry black woman.” 

These kinds of stressors, even if seemingly minor in isolation, add up over time, and not just in healthcare, but across all kinds of important areas in life, such as education, work, and housing. It’s therefore not surprising that minority groups have less positive health outcomes - living with cancer is completely overwhelming as it is, so some days you just may not have the energy to get over the extra hurdle thrown at you. But that sometimes can make all the difference in your trajectory.

A big shout out to Shoni for bringing to life what we read about in research papers and textbooks. You are not just a number, and we thank you for helping us see you. 

Jared shared what it was like to get a blood stem cell transplant in the middle of the pandemic and how he is adjusting to the identity and life of a survivor, including edible gummies, makeup experiments, and being a Be The Match ambassador.

You can find Jared on Instagram at @jaredlips and listen to his fun podcast Back on Air. 
Learn more about Be The Match and how to become a donor on its website.

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at [email protected]. 

Thank you for listening!

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My reflections on the conversation:

I had a lot of fun chatting with Jared, especially the part about shitty self-care, for a couple of reasons: I was slightly amused that South Park is part of Jared’s way to “check-out” because if anyone asks my husband what we do on vacation, he will tell you that South Park is the first thing I look for on TV when we check into a hotel. There’s something very cathartic about crude cartoons I guess. 

But also when Jared mentioned nighttime being more of a struggle for his mental health, sometimes worrying about cancer coming back, it made me think about how I sometimes have this nagging thought about me or someone else close to me getting cancer in the near future. I guess there’s a bit of PTSD there having had so many close family members get cancer, but it also made me realize how much harder it must be for patients and survivors to deal with that kind of anxiety on an ongoing basis. 

I know Jared said that he’s now wrapping his head around his identity as a survivor and is therefore looking for ways to get involved with the cancer community. I love that he’s an ambassador for Be The Match, because cancer and diseases can be such a heavy and sterile topic and his fun and glamorous persona can make the topic more accessible for a wider audience. 

Emily talked about the importance of listening to your body and not being afraid to question your doctor when his or her guidance is contrary to what you believe is the right answer for you. She also shared what it was like to deal with an unexpected disability after surgery.

You can find Emily @wonkyarm on Instagram and at her blog. 

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Email [email protected] or come say hi on Instagram, Facebook, Twitter, or Linkedin!

Thank you for listening!

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My reflections on the conversation:

You probably heard me talk more during this episode than most others because I was feeling pretty frustrated by the experiences Emily had to go through with her doctor. I know she was being very diplomatic about not discounting his professional abilities completely, but to not have changed his ways given what happened the first time tells me that he did not take ownership of the situation. This honestly is a sign that he is not very focused on improving patient care and it’s so dangerous for patients who are medical outliers like Emily is. 

I also want to thank Emily for highlighting the experience of living with a disability after cancer. In addition to feeling isolated from her peers (because cancer can be rather foreign to people in that age range), she had to navigate an extra layer of complexity when it came to school, sexual intimacy, and work. Just thinking about how nerve-racking interviews still are for me today, I can only imagine how hard it was for Emily to have had to not only manage her own insecurities but also quickly learn to direct conversations with strangers in a way that didn’t reduce her to just cancer and the disability. 

I hope Emily is super proud of what she has accomplished given all the barriers she has had to overcome and continues to share her experiences through her creative writing because there is so much strength in her words and it will be an inspiration to others who are dealing with similar challenges. 

Kunal shared his experience taking on the caregiver role as his wife dealt with breast cancer and how setting clear boundaries for everyone involved - including himself - ultimately helped him to walk away from the experience with no regrets.

The books that Kunal found helpful for working through his grief after his wife passed away are: 

• The Secret by Rhonda Byrne
• Option B by Sheryl Sandberg
• My Gita by Devdutt Pattanaik 

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at [email protected]. 

Thank you for listening!

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My reflections on the conversation:

I really admire the way Kunal was very clear-eyed about his priorities in a really complicated situation that often has no good answers. Take the way he managed communication with every person - from doctors, to friends, and family - he was unapologetic about how and how much he would engage. But those are the types of decisions you have to make when you are taking care of someone with serious health issues. You realize that many of the expectations that you once cared to fulfill no longer matter. And people have to be mature enough to know that it’s time to meet you where you are.

The other thing that Kunal said that really resonated with me was that money has no purpose once your loved one passes away. Before my dad passed away, I was super conservative about saving money for retirement, but after I watched my dad get diagnosed with cancer a year out from retirement and barely enjoyed the retirement life he was looking forward to, I realized that I being prudent about long term finances was important, but not at the expense of making great memories now with the people I love. 

Don’t get me wrong, I’m not saying that everyone should go out and rack up a bunch of credit card debts to go on luxury vacations, but it’s so important to remind ourselves often that life is tenuous so spending every moment honoring this life you have been given, is so important. 

Rod shared his experience as a male breast cancer patient and how that experience led him to become an advocate and create a resource site to serve the needs of the male breast cancer community.

You can find Rod on Twitter or at his website http://malebc.org/.

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at [email protected]. 

Thank you for listening!

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My reflections on the episode:

I’m super appreciative of Rod coming on the show to share his experience as a male breast cancer survivor and advocate. I learned so much - from how the lack of awareness about male breast cancer results in more delayed and therefore more dire diagnosis, to the differences in how men seek support online. It was also very interesting to hear about the advocacy work he has been doing with the “pink” cancer organizations. 

I was glad to hear that Rod did feel supported by women in online forums and that he felt well taken care of by the female experts on his medical team. Since men account for such a small percentage of the newly diagnosed population each year, I expected Rod to run into more problems, and was slightly surprised to hear otherwise. I feel like I’ve heard more problems for women breast cancer survivors than in his experience. I don’t know if Rod was being polite or if that was really the case, but my guess is that women as a marginalized group are able to better empathize with the men when the dynamic is reversed. That’s definitely my bias as a woman but I don’t think my hypothesis is too far-fetched. 

Dorothy explained what it was like to be diagnosed with breast cancer at the age of 26 and how being at high risk for developing ovarian cancer within the decade made major life decisions incredibly complicated for her.

You can find Dorothy on Instagram or at the Atrium Foundation website. Check out her book 26 & Fu¢ked where you can get her full story. 

Want to hear other stories from cancer patients, survivors, or co-survivors like this one? Want to share your story? Get in contact with me at: https://talkaboutcancerpodcast.com/

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at [email protected]. 

Thank you for listening!

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My reflections on the episode:

Before speaking with Dorothy, I didn’t fully understand the unique challenges young adults face when they are diagnosed with cancer. Because my dad was already in his 60s, he didn’t have to deal with how cancer could have impacted big life decisions like finding a partner or having children. Retirement was the only key decision on the horizon for him and that was really a no-brainer. 

So it’s been really eye-opening and humbling for me to hear about how cancer has complicated Dorothy’s young adult years - having to live with fear, anxiety, and guilt. It’s amazing how she has moved through all of that and is now channeling her energy towards doing things she wants to do in life, like writing a book and starting the foundation to help others dealing with cancer. 

The other thing I really appreciated about Dorothy is how perceptive she is of the experience for her husband as a co-survivor (which BTW is a new term for me). It’s very apparent that she cares deeply about how he’s impacted by the experience of her cancer journey and this incredible empathy really has served as the foundation on which they continue to have tough conversations and grow together. 

Angel shared how being a nurse has affected her experience with her mom’s cancer care and why it’s crucial for caregivers to honor their own needs during and after the caregiving journey.

Want to hear other stories from cancer patients, survivors, caregivers, or family members like this one? Want to share your story? Get in contact with me at: https://talkaboutcancerpodcast.com/

Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at [email protected]. 

Thank you for listening!

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My reflections on the episode:

I loved hearing and actually seeing the transformation Angel is experiencing in her life during our conversation. It was obvious that when we talked about her experience with her mom’s cancer care, there was still a mix of sad emotions there. But when we started to talk about this new path she is on toward healing and new possibilities, everything changed. She smiled and laughed, moved around in her seat with excitement, gesturing with her hands. The enthusiasm for the future was palpable and it’s truly wonderful to see. 

As we kept chatting after the recording, it became more clear to me that the thing that brought some of the repressed emotions to the surface was Angel’s experience working in the hospital during COVID and having to witness so many families say goodbye under awful circumstances. For those of us not in the medical profession, we knew that things were awful for people working in hospitals this past year, but Angel’s story made it more real for me what a struggle it has been, and how much the medical professionals have had to endure, not just the explosion in the number of patients to take care of, but the emotional trauma and triggers that came with the experience. 

I’ve been saying this elsewhere but I am going to take a moment to say thank you again to the medical professionals who have been taking care of our communities during this crisis. I hope all of you are listening to your inner voices and finding a way forward like Angel has.