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    Every step of the way

    en-usMay 05, 2021
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    About this Episode

    We have our first sister duo on the show to share their story with us. You will hear about how they managed stress family members and friends had unintentionally caused and how they were always a team in getting through every situation. 

    I had fun chatting with the sister duo Bella and Tonia. As someone who didn’t grow up with a sibling under the same roof, I marveled at the close relationship they have with one another. But what was very interesting to me was that, even as close as they were, they still needed to find support and release away from each other sometimes. Like how Bella talked about feeling like she was on an island during treatment even though Tonia was at every doctor’s appointments, or how Tonia would only cry when she wasn’t around Bella, because Tonia knew it would have only stressed Bella out more to see her in distress. I’m glad they both then also talked about what helped them get through, like how Bella found the support groups on FB so she didn’t feel so alone anymore and Tonia would take time out to do things she wanted to do and not be anybody’s caregiver every once in a while. 

    One thing Bella said that opened my eyes was to surround yourself with people who not only love you, but more importantly, people who will challenge your decision because they know you are making them based on fear or anger. I’m a big advocate for respecting a patient’s decision about their own treatment, especially when it comes to the decision to not pursue treatment. But Bella helped me understand that sometimes a bit of reasoning may be warranted, especially if you can tell that the patient’s decision-making process may be too clouded by negative emotions. 

    Lastly, I loved their message about there being no shame in asking about resources that may be available to cancer patients. A bit of TLC - whether it’s free massages or gift cards - isn’t going to make everything better but it can help in getting through one day to the next. And as in the example they shared, unless you ask, you won’t always be told what’s available… which honestly boggles my mind but that’s a topic for another day.

    Here are some of the resources Bella and Tonia shared: 

    Please follow the podcast if you would like to hear more stories from cancer survivors, caregivers, and family members. I would really appreciate it if you can leave an honest rating and review on Apple Podcasts or Podchaser so I know if I am serving the interests and needs of you listeners out there. You can also share any feedback and suggestions directly with me by visiting my Instagram page or email me at talkaboutcancerpodcast@gmail.com. 

    Thank you for listening!

    Recent Episodes from Talk About Cancer

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    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.

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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. 

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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.

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    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.

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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. 

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    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.

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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. 

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    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!

    ++++++++++++

    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. 

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    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!

    ++++++++++++

    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. 

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    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!

    ++++++++++++

    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!

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    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!

    ++++++++++++

    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.

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    Talk about the elephant

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    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!

    ++++++++++++

    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. 

    Finding post-traumatic growth

    Finding post-traumatic growth

    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!

    ++++++++++++

    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.