Lean into the pain

Reema shared how her cancer experience might have been similar to and different from someone who is not an oncologist, and how this experience has influenced the way she practices medicine today.

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Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

Before talking to Reema, I wondered how her experience with cancer might be different from people who are not doctors. The one thing that I didn’t expect was the extra layer of stress she had when family and friends continued to look to her to be the expert of her own situation. She definitely was the medical expert, but I can see how wearing the “doctor” and the “patient” hats at the same time would be very confusing and exhausting. As she gently reminded me during our conversation - doctors are humans too! And there are simply no shortcuts when it comes to navigating the emotional experience of cancer. 

Charles shared how having lost so many family members to cancer shapes how he approaches caregiving for his wife today, and how leaning into art and dark humor has helped him process and cope with it all.
 
Check out some of Charles' recent work: 

• Short film: A History of Worry
• Short story collection: Slippery When Metastasized
• Coloring book: Pug Monster Gallery
• HuffPost article about air guitar workout

You can connect with him on his website, Twitter, and Instagram.

Please follow the podcast if these stories are resonating with you. I would also be grateful 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 talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

I was struck by the way Charles framed his caregiving experience as being "on the ride.” I never thought about my own caregiving experience this way because it sounds a bit detached or somehow not invested in what’s going on. But I knew that was not what Charles meant and when I thought more about it, I realized how helpful this framing could be for caregivers - because it takes us out of the “driver seat,” which is what many of us would try to “inhabit” in a difficult situation because we feel it’s what we are supposed to do to take care of our loved ones. But when we do that, our own needs can come to the forefront and the needs of the person dealing with cancer could get lost. 

This framing also acknowledges that we will not have complete control over the situation and it’s not our fault if our loved ones have to suffer. Acceptance doesn’t mean that we don’t try our best to provide support, but it takes the pressure off of caregivers to keep searching for the perfect solution when often, that does not exist.

Nefa-Tari shared the devastating experience of being diagnosed with uterine cancer and ending her marriage soon after, and how she eventually found her way out of that incredibly tough period by advocating for her own needs and leaning on her faith.

Check out the services SHARE offers and connect with Nefa-Tari!

Please follow the podcast if these stories are resonating with you. I would also be grateful 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 talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

Losing a relationship after a cancer diagnosis - whether a family member or a friend - can feel like the ultimate betrayal for cancer people. I’ve learned early on that some people just don’t know how to deal with all the emotions and responsibilities that come with a cancer diagnosis, but it still sucks when the person you thought you could count really isn’t up for the job. Like Nefa Tari and other guests on the show have mentioned, when dealing with cancer, you have to prioritize yourself, even if that means ending relationships that are so important to you. But the space that gets vacated will be filled by people who can meet you where you are. 

Sagar took us through some in-depth reflections about health, purpose, and the importance of having a creative outlet, which he discovered when his wife started to paint on his head after chemo.

Check Sagar and Sheena's collaborations on Instagram @myheadisacanvas!

Please follow the podcast if these stories are resonating with you. I would also be grateful 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 talkaboutcancerpodcast@gmail.com.

Thank you for listening!

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My reflections on the conversation:

We have heard about so many different types of creative outlets from the guests this year. Many write, some create art. I love that Sagar’s version of the creative outlet is a combination of both of those things AND it’s done in collaboration with his wife, Sheena. We often talk about how caregivers’ needs may be less prominent so this is a beautiful way for Sagar to bring her along on the healing process. 

Kandis shared how she picked herself back up one step at a time after a tough caregiving experience and how she eventually found positive ways to channel her grief. 

Some resources Kandis mentioned: 

• Gilda's Club Chicago 
• Ovarian Cancer Research Alliance
• Therapy for Black Girls

Also check out Kandis' article about compound caregiving on Caregiving.com.

You can follow her on Instagram @kandi_koated.

Please follow the podcast if these stories are resonating with you. I would also be grateful 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 talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

Thanks to Kandis for sharing what it was like to return to work after having been a full-time caregiver for a number of years. This is another layer of complexity that caregivers have to deal with on top of the emotional turmoils that could come with grieving the loss of a loved one. And Kandis was absolutely right about feeling bad about yourself when you keep getting rejected by employers. I know that feeling and can only imagine how hard it would be to have to go to interviews when you are still trying to make sense of the traumas you experienced. Kandis’ experience reminds us how important and helpful working with a therapist can be when you are dealing with grief. 

Melody shared what it was like to deal with cancer during her childhood, the ways that experience has influenced different stages of her life, and the things she continues to uncover as an adult.

You can follow Melody on Instagram @lunapeakfoundation, on Facebook @lunapeakfouncation, or on Twitter @lunapeakfamily. You can also find more information about the foundation at https://www.lunapeakfoundation.org/.

Please follow the podcast if these stories are resonating with you. I would also be grateful 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 talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

I’ve been reflecting on Melody’s experience trying to talk to her family members about their experience being her caregivers. As I’ve mentioned in the past, I’m a big believer in processing the challenging experiences in life. Some like me, prefer to talk about the experiences, many find creative outlets like writing, visual arts, or music. 

But when I heard Melody’s family members’ reactions, it made me wonder if processing is not good for everyone? Or maybe, for some the processing is so painful that they need an expert - like a therapist - to guide them through it. So nudging someone to process when they are not ready or have the adequate “tools” to do so is probably not going to work so well. This is another example of how my guests’ experiences continue to help me understand perspectives that are different from mine. 

Akili reflected on the disruptions he faced when his son Kaine was diagnosed with leukemia more than two years ago and the growth he had to go through to survive this “good” bad diagnosis.

Please follow the podcast if these stories are resonating with you. I would also be grateful 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 talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

I still don’t know how Akili manages to do everything he has to do from being a father of six and juggling multiple jobs on top of Kaine’s medical appointments! He’s probably one of those people who only sleeps four hours a night. Even then, as Akili said, it takes a village to get through an experience like this, and I’m so glad he got to a place where he felt comfortable with asking for help and receiving help. 

I also loved Akili’s point about performing random acts of kindness and how it’s what makes our communities stronger. It’s a really important message for us to remember at a time when we are going through so much trauma and loss across so many communities. 

On a more positive note, Kaine got his port removed one month early and is on track to finish chemo by early December!

Anna explained how cancer treatment “broke” her vagina and the challenges with dating when she took sexual intercourse off the table. Her experiences inspired her to create the Entwine dating app to help others like her find companionship with confidence.

You can follow the app on Instagram, Facebook, and Twitter!

Please follow the podcast if these stories are resonating with you. I would also be grateful 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 talkaboutcancerpodcast@gmail.com.

Thank you for listening!

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My reflections on the conversation:

I know this episode probably feels different from the rest because Anna and I ended up going on a deep dive about her experience with vaginismus, but I thought it was important that we give space for this topic because even though Anna’s experience is specific to having vaginismus, her underlying message is relevant to anyone dealing with sexual limitations after cancer treatment.

Anna reminded us that sex and intimacy can come in many forms, and when our loved ones’ sexual needs change because of serious health issues or emotional stress, expanding our definitions of sex and intimacy can give us more options for supporting each other’s needs.

Thanks again to Anna for sharing her own experience with such openness and a sense of humor. Go check out Entwine so you can explore dating with more confidence again! 

Lauren shared what it was like to follow her daughter Melissa's lead in having open conversations about end-of-life wishes, which gave Lauren a path forward during grief and led to the founding of 13 Thirty Cancer Connect to support thousands of AYA cancer patients in her community.

Find out more about 13 Thirty Cancer Connect's programs that are now available virtually and locally in Rochester NY and Syracuse NY. 

Please follow the podcast if these stories are resonating with you. I would also be grateful 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 talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

I thought a lot about what Melissa’s brother said during his graduation speech to his 400 classmates 20 years ago - that Melissa’s life was not taken away, but that it was just shorter than most. I’m astounded by how much is packed in that one simple sentence in the mind of a 16-year-old. There was a sense of defiance, meaning - don’t pity my sister. But there was also this profound wisdom about - it’s not how long you live that matters, but what you do with the time you were given. I know that losing my dad helped me better appreciate the finality of my own life and has given me focus and gratitude that I probably would not otherwise have if I didn’t go through that painful experience with him. 

I’m also keenly aware, however, that insights like this are often luxury in a sense. It’s a perspective that’s easier to hold when you can put the adversity behind you. For those in the thick of things, it may not be so easy. But that’s also what’s really incredible about Melissa, is that she had that clarity while facing her imminent death. 

Fabian took us back to the time when his existential crisis collided with his cancer diagnosis and how he was able to pull through 900 days of chemo with a vision to support other cancer people struggling with mental health.

You can download the War On Cancer app on your phone and check out the amazing Clinical Trial Finder feature. You can also connect with Fabian on Instagram @fabianbolin. 

Please follow the podcast if you are enjoying the show. I would also be grateful 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 talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

What’s really important about Fabian’s story is that oftentimes when you get a cancer diagnosis, it doesn’t mean that whatever crisis you were already facing in your personal life just gets put on hold. As we heard, crises can have a way of amplifying each other and making the experience more complex and difficult to untangle. I was really impressed with how Fabian was able to pull apart what was helping him vs not in the middle of such an intense emotional rollercoaster. It shows how much work he has put into processing his own experiences, and ultimately, channeling the learnings towards building the War on Cancer platform to support other cancer people struggling with mental health.