Abigail Johnston shares her experience as a patient with de novo metastatic breast cancer since 2017. She discusses the challenges she faced in getting a diagnosis and the systemic flaws of the healthcare system. Abigail emphasizes the importance of being an informed and proactive patient, and advocating for yourself even if you’re labeled “difficult.” Abigail’s fighter spirit in this episode is truly inspiring, and that’s what makes her a fellow patient from hell.
About our guest
Abigail is a daughter, mother, wife, and attorney who was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in June of 201, close on the heels of a misdiagnosed early stage diagnosis in March of 2017. The first few months after her diagnosis were a whirlwind and full of many profound changes, including quite a few surgeries, but Abigail soon found her footing and started her blog "No Half Measures," where she talks about whatever comes to mind, within the lens of her Stage IV diagnosis. Abigail's boys, Liam and Malcolm, who were nearly 2 and nearly 4 at the time of her diagnosis, along with her husband, Elliot, make their own appearances in Abigail's advocacy since it truly is a family affair. For Abigail, advocacy is a whole life endeavor and she never does anything halfway; working with a variety of organizations, including, but not limited to:
1) Project Life Director of Mentorship and Legal Clinics
2) SurvivingBreastCancer.org, Board Member and Chair of MBC Leadership Committee
3) PIK3CA PathBreakers Co-founder
Outside of her cancer life, Abigail enjoys spending time with her family and very spoiled cat, reading, crafting, and dreaming up more ways to experience life with her boys.
Key Moments
25 minutes:
“I read a study and I'm not going to remember the site, but just talking about the ratio of patients to healthcare workers in hospitals, that the only way that it's actually safe is if every patient stays in bed. That's the only way it's safe, so if you think about that, that there's not even quite enough healthcare workers if everybody needs something, and if everybody's up and out of bed, that to me is an excellent metaphor for how I think a lot of other things happen. The only way their practice works is if people are not difficult. The only way their practice works is if people come and show up when they're told to come and show up. So I try to keep that in mind when I'm being difficult.”
28 minutes:
“So I tell all my doctors, I'm the boss, I'm the decision maker, you are my advisor. So you are telling me, because you know, as a, and I'll even talk about like as a lawyer, I would have expert witnesses, right? And they would help me understand or explain something that I'm unfamiliar with. So I tell them, I take responsibility for my decisions. I am leaning on you for your expertise. I am leaning on you for your recommendations, but I'm looking at this as your opinion, you're giving me your opinion, which is why I seek out multiple opinions from multiple doctors.”
50 minutes:
“When you are told that you have a diagnosis that's going to end your life, there's a process that everybody goes through in terms of how do you live your life with that? There's many metaphors. The sword of Damocles is kind of the thing that resonates the most with me. There's literally something hanging over your head that could drop and decapitate you at any point. And learning to live with that hanging over you, I don't know if you ever watched Dexter, you talked about having a dark passenger. That also kind of resonates with me, right? Maybe a little less on the psychopath side, but just, you have this piece of who you are, because cancer is ourselves that went haywire, but you have this thing inside of you that literally could end your life at any moment, but yet you're still alive and you still are living your life or trying to live your life at the same time. Carrying those two very, very different things, I think ambivalence is another word that kind of comes to mind, right? You're having to live your life with these two very, very different perspectives or emotions and they're there all the time.”
Disclaimer: This podcast blog is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast blog or materials linked from this podcast blog is at the user's own risk. The content of this podcast blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.
About our guest
Abigail is a daughter, mother, wife, and attorney who was diagnosed with Stage IV Metastatic Breast Cancer (MBC) in June of 201, close on the heels of a misdiagnosed early stage diagnosis in March of 2017. The first few months after her diagnosis were a whirlwind and full of many profound changes, including quite a few surgeries, but Abigail soon found her footing and started her blog "No Half Measures," where she talks about whatever comes to mind, within the lens of her Stage IV diagnosis. Abigail's boys, Liam and Malcolm, who were nearly 2 and nearly 4 at the time of her diagnosis, along with her husband, Elliot, make their own appearances in Abigail's advocacy since it truly is a family affair. For Abigail, advocacy is a whole life endeavor and she never does anything halfway; working with a variety of organizations, including, but not limited to:
1) Project Life Director of Mentorship and Legal Clinics
2) SurvivingBreastCancer.org, Board Member and Chair of MBC Leadership Committee
3) PIK3CA PathBreakers Co-founder
Outside of her cancer life, Abigail enjoys spending time with her family and very spoiled cat, reading, crafting, and dreaming up more ways to experience life with her boys.
Key Moments
25 minutes:
“I read a study and I'm not going to remember the site, but just talking about the ratio of patients to healthcare workers in hospitals, that the only way that it's actually safe is if every patient stays in bed. That's the only way it's safe, so if you think about that, that there's not even quite enough healthcare workers if everybody needs something, and if everybody's up and out of bed, that to me is an excellent metaphor for how I think a lot of other things happen. The only way their practice works is if people are not difficult. The only way their practice works is if people come and show up when they're told to come and show up. So I try to keep that in mind when I'm being difficult.”
28 minutes:
“So I tell all my doctors, I'm the boss, I'm the decision maker, you are my advisor. So you are telling me, because you know, as a, and I'll even talk about like as a lawyer, I would have expert witnesses, right? And they would help me understand or explain something that I'm unfamiliar with. So I tell them, I take responsibility for my decisions. I am leaning on you for your expertise. I am leaning on you for your recommendations, but I'm looking at this as your opinion, you're giving me your opinion, which is why I seek out multiple opinions from multiple doctors.”
50 minutes:
“When you are told that you have a diagnosis that's going to end your life, there's a process that everybody goes through in terms of how do you live your life with that? There's many metaphors. The sword of Damocles is kind of the thing that resonates the most with me. There's literally something hanging over your head that could drop and decapitate you at any point. And learning to live with that hanging over you, I don't know if you ever watched Dexter, you talked about having a dark passenger. That also kind of resonates with me, right? Maybe a little less on the psychopath side, but just, you have this piece of who you are, because cancer is ourselves that went haywire, but you have this thing inside of you that literally could end your life at any moment, but yet you're still alive and you still are living your life or trying to live your life at the same time. Carrying those two very, very different things, I think ambivalence is another word that kind of comes to mind, right? You're having to live your life with these two very, very different perspectives or emotions and they're there all the time.”
YouTube Timeline:
0:00-11:28 About Abigail
11:29-27:23 The Challenges of Being a Patient
27:24-49:42 Preparing for an appointment
49:43-59:58 Coping with metastatic breast cancer
59:59-1:00:18 Goodbye and thanks Abigail!
1:00:19-1:01:11 Disclaimer
YouTube Tags: Manta Cares, mbc, metastatic breast cancer, breast cancer awareness, healthcare, american healthcare, primary care physician, primary care, cancer, oncology, patient advocacy, personalized care
Disclaimer: This podcast blog is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast blog or materials linked from this podcast blog is at the user's own risk. The content of this podcast blog is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions.