内容提示
在我们进入本期节目之前,请注意,我们今天的对话包含了关于癌症诊断与治疗、医疗不当行为、歧视性语言使用以及儿童性虐待的讨论。请谨慎收听。如果您感觉需要支持,我们在节目说明中列出了一些资源。
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Before we get into the episode, our conversation today includes discussions about cancer diagnosis and treatment, medical mistreatment, the use of discriminatory language, and child sex abuse. Please listen with care. If you're feeling like you need support, we've got resources listed in our show notes.
癌症年轻化趋势与诊断困境
您正在收听的是《Mistreated》,我是 Nam Kiwanuka。被诊断出患有癌症,就像腹部挨了一记重拳。无论情况如何,无论年龄多大,癌症诊断都会改变人生,而且人们被诊断出癌症的年龄正越来越年轻。
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You're listening to Mistreated. I'm Nam Kiwanuka. Being diagnosed with cancer is a gut punch. Whatever the case, whatever age, a cancer diagnosis is life-changing and people are being diagnosed younger.
根据《英国医学杂志》的数据,从1990年到2019年,早发性癌症的诊断率增加了79%。病例数上升的原因可能有很多。我们所知道的是,到2050年,全球癌症诊断病例预计将增加75%。这一数据来自同行评审医学期刊《柳叶刀》的一份报告。获得诊断也很困难,因为在许多地区,检测是基于年龄的。加拿大各地的倡导团体呼吁降低结肠癌和乳腺癌筛查的年龄限制。
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According to the British Medical Journal, between 1990 to 2019, early onset cancer diagnoses increased by 79%. There are a number of possible reasons why case numbers are going up. What we do know is that by 2050, global cancer diagnoses are set to increase by 75%. This from a report in the Lancet, a peer-reviewed medical journal. It's also difficult to get a diagnosis because in many jurisdictions, testing is based on age. Advocacy groups across Canada have called for the lowering of age limits for colon and breast cancer screenings.
专家警告说,如果降低年龄限制,我们可能会看到更多的假阳性结果。但如果有人感到不适或担心自己患有癌症,为什么他们的年龄会妨碍他们获得所需的护理呢?
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Experts warned that if the age limit is lowered, we could see more false positives. But if someone feels unwell or is worried they have cancer, why should their age prevent them from getting the care they need?
2024年,安大略省政府将乳腺癌筛查的年龄从50岁降低到40岁,以便让更多女性获得筛查服务。有一种观念认为乳腺癌有家族遗传性,但研究表明,80%被诊断出患有乳腺癌的女性并没有家族病史。那么,在年轻时被诊断出癌症是种什么体验呢?我们联系了 Farrah Khan,她是一位年轻的母亲,被诊断出患有两种不同的癌症:乳腺癌和宫颈癌。我们谈论了她如何应对两种癌症诊断,以及这对她的家庭、事业和生活意味着什么。
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In 2024, the Ontario government lowered the age for breast cancer screening from 50 to 40 to allow more women access to screening services. There is a perception that breast cancer runs in the family, but studies show that 80% of women who are diagnosed with breast cancer don't have a family history of it. So, what's it like to be diagnosed at a young age? We reached out to Faracan, a young mother of one who was diagnosed with two different cancers, breast and cervical. We spoke about what it was like to navigate two cancer diagnosis and what that meant for her family, her career, her life.
这可能是我迄今为止在播客上进行过的最感人、最艰难的对话之一。但在泪水之中,也有欢笑和喜悦。我们有必要听听这些经历,因为它们让我们全面了解我们的医疗系统所带来的挑战。Farrah Khan 现在加入我们。
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This was probably one of the most moving and one of the toughest conversations I've had on the podcast so far. But through the tears, there was laughter and joy. It's important for us to hear about these experiences because they give us a full understanding of the challenges our healthcare system poses. Farra Khan joins me now.
初次诊断:充满创伤与歧视的经历
Nam Kiwanuka: Farrah Khan,欢迎来到我们的播客。
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>> Farrah Khan, welcome to the podcast.
Farrah Khan: 谢谢。
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>> Thank you.
Nam Kiwanuka: 你能介绍一下自己和你的工作吗?
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>> Uh, could you please introduce yourself and what you do?
Farrah Khan: 哦天哪,这是个好问题。我做什么?嗯,我是一位母亲。不,嗯……当然。但是,是的,我不知道,现在生病后当人们问起,我只是不希望我的工作成为第一件事。所以我是一位母亲,一个家庭成员。我也是一名性别平等顾问。我与企业、政府和组织合作,进行系统性变革工作,帮助他们将目标付诸行动。
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>> Oh my gosh, that's a great question. What do I do? Um, I'm a mom. No. Um, >> of course. >> But yeah, like I don't know when people ask now after being ill, I just don't want my work to be the first thing. >> So I'm a mother. I'm a family member. I'm also a consultant on gender equity. I do systems change work with corporations, governments, organizations to help them move their goals to action.
Nam Kiwanuka: 嗯,你知道,我们将会谈到母亲这个角色。我们必须谈。但是,你知道,带我回到你44岁的时候。你终于得到了你梦想的工作,你的宝宝即将从幼儿园毕业。你和你的配偶正在讨论可能再生一个孩子,你去看医生讨论这个可能性。接下来发生了什么?
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>> Well, you know, we are going to talk about motherhood. We must. Um, but you know, take me back to age 44. You finally have your dream job and your baby's about to graduate from kindergarten. Uh, you and your spouse are talking about having uh the potential of having another baby and you go to your doctor to talk about this possibility. What happens next?
Farrah Khan: 是的。我的孩子当时刚从学前班毕业,所以他还很小,才三岁。我去看医生,你知道,我们每年都做一次巴氏涂片检查(Pap test: 一种用于筛查宫颈癌的细胞学检查方法),因为我属于宫颈癌的高风险人群。所以我每年都接受检测。他们做了常规检查,结果发现了血迹,这通常是不对劲的信号。我以前也遇到过这种情况。所以,你知道,我知道我得去做LEEP(Loop Electrosurgical Excision Procedure: 一种用电热圈切除宫颈病变组织的手术),得去看专科医生。
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>> Yeah. And my my child was graduated preschool, so he was he was young. He was three. Um, so I went to my doctor and you know, we do a pap test every year because I'm in the more high risk for cervical cancer. So I get tested every year. Um, and they did uh the regular test and what they found is blood and usually that's a sign of something not right. And I've been there before. So, you know, I knew that I had to go for a leap and I had to go to a specialist.
但这次感觉有些不同。我去看专科医生时,那次经历相当恐怖。我去看了一位妇科专家,她非常粗鲁,但她以一种创伤知情的方式行事,确保有另一个人在场握着我的手。你知道,我记得她抚摸着我的腿,然后让我张开膝盖,这样她就可以进入我的阴道,刮取我的宫颈组织。
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But something felt different this time. And I when I went to the specialist, it was pretty horrifying. I went to a specialist, a gynecologist, and she was very gruff, trauma-informed in the way that she made sure there was another person there that held my hand. You know, I remember her rubbing my leg and when and telling me to open my knees so she could go in between and go inside my vagina to do scraping of my cervix.
但是,当她在那儿的时候,我处于一个非常脆弱的位置,她看着另一位住院医生,那里的住院医生,这是一位工作了很长时间的医生,对他们说:“看好了。”
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Um, but while she was there, so I am in this really vulnerable position and she looks to the other resident, the resident there, and this is a doctor who's been working for a very long time and says to them, "Watch this."
然后我得花点时间缓缓,因为……当然,请慢慢来。嗯,她看着我,然后说:“你和男人睡过吗?”我说:“是的。”
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And then I have to take a moment because of course, please take Yeah, take a moment. Um, she then looks at me and says, "Have you ever slept with men?" And I said, "Yeah."
Nam Kiwanuka: 这又是在你躺在检查台上的时候……
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>> And this is again while you're on the
Farrah Khan: 是的。而且她在我的病历里已经写明我是个女同性恋,我的确是。她问:“你和男人睡过吗?”她指的是顺性别男性。我说:“是的。”她转向住院医生说:“看吧,大多数女同性恋一开始都是和男人睡觉的。”就在那一刻,我感觉非常不安全。
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>> Yeah. And she already in my chart had said that I was a lesbian, which I am. Um, and she said, "Have you ever slept with men?" And she was talking about sis men. And I said, "Yes." turns to the resident and says, "See, most lesbians start sleeping with men first." And it was that moment that felt so unsafe.
Nam Kiwanuka: 这就是你发现自己得了宫颈癌的时候。
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>> And this is when you found out that you had the cervical cancer.
Farrah Khan: 这是在她刮我的宫颈的时候,她还从我的宫颈里扯出了一个息肉。
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>> This is when she's scraping out my cervix and she pulled a pull-up out of my cer my cervix as well.
Nam Kiwanuka: 我猜是没有任何止痛药的。
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>> And I'm guessing with no pain medication.
Farrah Khan: 没有止痛药。我大量出血。我开始变得恍惚,我只是非常震惊。我坐了起来。我对她的评论感到震惊,也对她随手就从我身体里扯出一个息肉感到震惊,我后来才知道,人们移除息肉是需要麻醉的,需要全身麻醉。她取出了一个肿块,说:“你知道,我们会拿去做活检,但我不会太担心。”那时我正坐起来。血溅了我一身,溅得到处都是……有时候谈论这个真的很难。
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>> No pain medication. I was bleeding profusely. Um, I was started to be in a daysaze and I was just so shocked and I sat up. I was shocked by her comment and I was shocked that she just casually pulled a pull-up out of like ripped out of my body which I found out later that people get anesthesia people go under to get pull-ups removed. Um, and she pulled out a a mass and said, "You know, we're going to go get this biopsy, but I wouldn't worry too much." And I was sitting up at that point. Blood was all over me, all over that um all over my um all over the It's just so hard to talk about sometimes.
Nam Kiwanuka: 我非常抱歉。
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>> I'm so sorry.
Farrah Khan: 没关系。她做完之后,我恍惚地坐起来,血在我的胯部积成一滩,就在检查台上,她没有清理。我恍惚地坐在那里,她只是把东西收起来。她说:“你知道,几周后我们拿到活检结果会给你打电话。”
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>> That's okay. Um I sat up after she did that in a days and there was blood pooling um around my crotch area um just like at the table and she didn't clean it up and I sat there in a days and she just put things away. She said, "You know, we'll call you in a couple weeks when we get the biopsy."
Nam Kiwanuka: 就这样。然后她们离开了房间。
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>> And that was that. And then they left the room.
Farrah Khan: 她们离开了房间。住院医生捏了捏我的膝盖,然后,你知道,看起来很抱歉,但什么也没说。然后我回家了,开始有点焦虑,但每个人都说:“会没事的”,因为我以前也经历过,会没事的。
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>> They left the room. the resident squeezed my knee and then, you know, looked apologetic but didn't say anything. Um, and then I went home and I started to get a little bit of anxious, but everybody was like, "It's going to be fine cuz I've been there before. It'll be fine."
几天后,她打电话给我,只说:“来我办公室一趟。”我没多想。她没告诉我带上我的伴侣,也没告诉我带个朋友,只说:“来我办公室。”我就去了,因为我没想过会有什么问题。而且,我想如果真有什么问题,她会告诉我带人来的。
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Couple days later, she calls me and just says, "Come to my office." And I didn't think anything. She didn't tell me to bring my partner. She didn't tell me to bring a friend. She just said, "Come to my office." And I just went because I didn't think anything would be wrong. And also, I thought if something was wrong, she would tell me to bring people.
我被带进她的办公室坐下。她进来时,甚至没关身后的门,就说:“是的,你得了。你得了那种非常糟糕的宫颈癌。”她指的是我得了小细胞神经内分泌宫颈癌(small cell endocrine cervical cancer),这是一种极其罕见的癌症。在加拿大,每年大约有1300名女性和非二元性别者患上宫颈癌。
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And I sat down in her office. I was brought in. And she when she came in without even closing the door behind her, she says, "Yep, you got it. You got the really bad cervical cancer." And what she meant is I have the small cell endocrine cervical cancer, which is extremely rare. About 1,300 women and general binary people get cervical cancer every year in Canada.
但其中只有2%甚至更少的人患有小细胞宫颈癌,而我得的就是小细胞宫颈癌,我的肿瘤一直在长。他们在做活检时切掉了一部分。但之后它还在不停地长,这很可怕。非常非常可怕。那是在2023年6月初。
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But out of those only 2% or even less than get small cell cervical cancer and I had small cell cervical cancer and my tumor was just growing. They had cut part of it off when they did the biopsy. Um but then they it just kept growing and it was scary. It was extremely scary. And that was in, you know, early June 2023.
我儿子几天后就要满四岁了,那天也是我父亲因胰腺癌去世的周年纪念日。我一团糟。但那一刻我也在想,我的工作怎么办?我能把这件事放慢一点吗?所以我真的以为,你知道,一切还会好起来的,我还有那种希望。很多患有我这种癌症的女性,也就是小细胞宫颈癌,如果先做手术切除子宫,是活不下来的。
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My son was going to turn four in a couple days and it was the anniversary of my father's death from pancreatic cancer. I was a mess. But I also was in that moment of what am I going to do about my job? Can I slow this down? So I literally thought you know it will still be okay like I had that hope. A lot of women who have the cancer that I did. So small cell cervical cancer don't live if they have surgery first to have a hyctomy.
所以我首先要做的是放疗和化疗。事情进展得太快了。我永远不会忘记,我对医生说,因为工作在我生活中是如此重要,我说:“我们能推迟这个治疗吗,直到我完成我的工作?你知道,我得去卢旺达参加一个国际会议,我还有这么多工作要做,这能等吗?”她就像是说:“哦不,我想你没明白,从现在起,你不能工作了。”
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So the first thing I had to do was radiation and chemo. And it was like things were moving so fast. And I'll never forget I said to the doctor because work was such a priority in my life um you know can we hold off this treatment until I do my job you know do I have to go to Rwanda um to this international conference I you know have all this work I need to be doing can this wait and she was like oh no I don't think you understand you are not working as of Now
系统性冷漠:当你的身份成为障碍
Nam Kiwanuka: 我们不必去任何让你感到不舒服的地方。
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>> we don't have to go anywhere that you don't feel comfortable.
Farrah Khan: 是的。
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>> Yeah.
Nam Kiwanuka: 嗯,关于那个部分,我只是深吸一口气来消化你告诉我的事情,因为你受到的对待实在是太不人道了,我为此感到非常抱歉。我只是想让正在收听或观看这个节目的人明白,那些活检,就像是直接从某人身体内部取组织。
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>> Um and that piece around like I'm just taking a breath to process what you're telling me because um the way that you've been treated is just so inhumane and I'm so sorry for that. Um, and I just want people who are listening and or watching this to understand that those biopsies, like you're literally taking tissue from the inside of someone's body.
Farrah Khan: 是的。
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>> Yeah.
Nam Kiwanuka: 没有药物。这非常痛苦。我也经历过同样的事情。但是你刚才描述的……简直就像恐怖电影里的情节。
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>> With no medication. It's extremely painful. I've gone through the same thing. But >> what you just described um is just it's like a straight out of a horror film.
Farrah Khan: 是的。这很可耻。而且这也不是第一次发生。十多年前,我第一次被诊断出宫颈癌前病变。我记得当时躺在那里,因为太不知所措而哭泣。然后他说:“你需要冷静下来,我才能做这个。”
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>> Yeah. It it was shameful. And it wasn't the first time that it happened. A decade before that or a little bit more, I got my first diagnosis with pre pre-ervical cancer. So like the um and I had gone to, you know, to a specialist and I remember lying there and just weeping cuz I was so overwhelmed. And then he was like, "You need to calm down so I can do this."
当他开始刮取和取出我身体一部分组织的手术时,我问:“我还能生孩子吗?”这是我最大的恐惧。“我还能生孩子吗?”他看着我说:“嗯,你是个女同性恋,所以你应该直接领养。”
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And when he started the procedure of scraping and taking out a part of my body, which is going in, you know, to take out the tissue, I said, you know, can I can I still have children? That was my big fear. Can I still have children? And he looked at me and said, well, you're a lesbian, so you should just adopt.
在那种时候,你是如此脆弱。你独自一人,因为他们不希望有人陪你进行手术,因为它不被当作一件严肃的事情。这就是我们一直看到的。女性的身体、女性的健康、女性的痛苦不被认真对待。我认为,尤其作为一名有色人种女性,我们被期望以不同的方式承受痛苦。关于这一点有各种各样的研究,尤其是关于黑人女性和原住民女性的。所以,我认为在那些时刻,非人化是如此明显。
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And you're so vulnerable at that time. you're alone because they don't want somebody in the procedure with you because it's not treated as something that's serious. And this is what we see consistently. Women's bodies, women's health, women's pain is not taken seriously. And I think especially as a racialized woman, we are expected to hold pain differently. And there's all kinds of research about it, especially around black women and indigenous women. So I think in those moments the dehumanization is so clear.
Nam Kiwanuka: 你曾写过关于你作为酷儿在寻求医疗保健时的经历,你曾分享说,一位医生劝你不要做巴氏涂片检查,因为,引用原话,“既然我不再和男人发生性关系,他觉得这是不必要的”,而很快你就会发现自己也患有乳腺癌。在一个你的身份被边缘化的医疗系统中,当你的生命悬于一线时,你是如何应对的?
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>> Um you've written about your experience as a queer person u when seeking health care before and you once shared that a doctor dissuaded you from getting a papsmear because quote since I was no longer having sex with men he felt it was unnecessary and soon you would you would find out that you also have breast cancer. Um, what was it like to navigate a health care system where your identity is otherredthered when your life is at in the balance?
Farrah Khan: 很可怕,因为我仍然在接受一些对我说过那些话的医生的治疗。而且,当你说发生了那样的事,有人对你说了如此恶劣的话时,人们也不相信你。
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Terrifying because I was still getting care from some of the doctors that were saying those things to me. Also, people don't believe you when you say that that happened that someone said such an atrocious thing to you. Like I it's
Nam Kiwanuka: 你认为这是为什么?
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>> Why do you think that is?
Farrah Khan: 我认为人们不了解恐同症和种族主义的深度及其对你寻求支持的影响。如果我没有遇到健康倡导者兼教授 Noticia Mascoy 博士,当时我十几岁末二十岁出头时,因为我受到的待遇太糟糕,我已经放弃了去做巴氏涂片检查。但幸运的是,她当时是“妇女健康在妇女手中”(Women's Health in Women's Hands)的执行董事,这是一个为有色人种女性服务的医疗中心,我第一次能够获得创伤知情护理(trauma-informed care: 一种理解、识别并回应各种类型创伤影响的医疗服务框架)。但即使在那里,你知道,他们还是把我送到那个医生那里做宫颈护理。当我回来告诉其中一位医生时,她说:“哦,他很好。我们送了很多客户给他。我不认为他会说那样的话。”是的,他会。他说了。
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I think people don't understand the depth of homophobia and racism and its impact on you seeking support. If I hadn't met health advocate and professor Dr. Noticia Mascoy when I had just kind of given up on going to get papsmears in my late teens early 20s cuz I was just like this is horrible the way I was being treated but she luckily um was the executive director of Women's Health Women's Hands which is a healthcare center for women of color and I was for the first time able to access traumainformed care. But even there, you know, they sent me to that doctor for the cervical care. And when I came back and told one of the doctors, she was like, "Oh, he's so good. We send him so many clients. I I don't think he would say something like that." Yeah, he would. He did.
Nam Kiwanuka: 你刚才说了一件非常重要的事情。你已经在那个系统中被边缘化了。所以,有一段时间,你因为那些经历甚至考虑过不做巴氏涂片检查。
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>> You just said something that's really important. You were being otherred in that system already. So, at one point, you actually thought about not getting papsmears because of those experiences.
Farrah Khan: 是的。
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>> Yeah. and then you end up having >> cervical cancer.
Nam Kiwanuka: 我确信。你有没有坐下来想过,“如果我停下来了会怎样?”因为你还在某个时候发现了癌前细胞。
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>> I'm sure. Have you sat with that and thought, "What if I stopped?" Because you also found precancer cells at one point.
Farrah Khan: 是的。我想我可能已经死了,你知道吗?我认为这就是问题所在。很多有色人种女性、黑人女性、原住民女性、跨性别者因为我们在医疗系统中的可怕经历而不去寻求医疗服务。这部分是个人医生和护士的问题,是的,但也是他们所经历的教育系统的问题,这个系统将女性健康视为次要科目。
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>> Yeah. I think I would be dead, you know? And I think that's the thing. So many racialized women, black women, indigenous women, trans people don't access care because of our horrific experiences with the medical system. And it's partly individual doctors, yes, and nurses, but it's also the education system that they go through that treats women's health as a minor subject.
测试和研究并不以女性为中心。而且,酷儿群体完全被忽视。当我想到在我经历了数月的盆腔放疗后,他们给我的一些宣传册时,放疗影响了我进行插入式性行为或内部检查的能力,因为盆腔放疗会影响各种事情。
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that tests and research isn't centering women. Um, and also that queer people are not seen at all. When I think about some of the pamphlets I was given after going through months of radiation on my pelvis which impacted my ability to have if I wanted to penetrative sex or have an internal exam because radiation affects pelvic radiation affects all kinds of things.
我收到的所有宣传册都是基于异性恋女性的,并且认为她们会与异性恋男性(即顺性别男性)发生插入式性行为。真的没有关于像我这样的人的讨论。人们认为这没什么大不了的,但这其实是件大事。
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All the pamphlets I received were based on heterosexual women and the idea that they would have penetrative sex in a with heterosexual men, right? So cis men. Um, and there was really no discussion about people like me. And people think that that's not a big deal, but it's a huge deal.
双重癌症下的精神与情感劳动
Nam Kiwanuka: 你也写过,我只想引用这部分。你写道:“虽然加拿大在许多方面是一个进步的国家,但我们很容易忘记,我们最近还有制度化恐同的历史,其影响至今仍在我们的社会中徘徊,包括在医疗保健领域。直到1982年,同性恋还被加拿大精神病学协会视为一种精神疾病。而旨在改变个人性取向或性别认同的、众所周知的有害治疗方法——转换疗法,直到2022年才在全国范围内被取缔。”那就像是三年前的事。知道了所有这些,因为你所做的工作,以及你年轻时经历的那些偏见。我们经常听说,你的心理健康,如果你压力大或者感觉不安全,当你患有身体疾病时,实际上会让你病得更重。所以,在一个你感觉不安全的系统中,不得不应对不止一种,而是两种癌症。嗯,你是怎么……我只是在想,你是如何在精神上……那对你的心理健康,或许还有你的身体健康,产生了怎样的影响?
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Well, you've also written, and I just want to quote this part. Um, you've written, "While Canada is by many measures a progressive country, it's easy to forget that we have a very recent history of institutionalized homophobia, the effects of which still linger throughout our society, including in healthcare. Homosexuality was considered a mental illness by the Canadian Psychiatric Association until 1982. And conversion therapy, a known harmful treatment aimed at changing a person's sexual orientation or gender identity, was only outlawed nationwide in 2022. That's like 3 years knowing all of this uh because of the work that you do uh and having experienced that bias when you were younger. We often hear that um your mental health uh if you're stressed out or if you don't feel safe um when you're having a physical illness, it can actually just make you more sick. So having to navigate not one but two cancers in the system that you didn't feel uh safe in. Um, how did you like I'm just like how did you mentally what how did that impact you your mental health and perhaps your physical health as well?
Farrah Khan: 我认为,这部分在我被诊断之前就已经在精神上影响我了。我当时所在的行业压力非常大。我在性侵犯和暴力侵害妇女领域工作了25年,在那个领域做了很多工作,但那个领域并没有真正照顾好我们。你知道,薪水低,工作常常不被视为技术性工作。所以压力很大,然后你再加上种族主义、恐同症的层面。
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>> I think in part this impacted me mentally even before I received my diagnosis. I was under so much stress in the industry I was in at the time. I worked for 25 years in the sexual assault and violence against women sector and did so much in that sector that didn't really take care of us. You know, it's underpaid. It's not seen as um skilled work often. So there's so much stress and then you add in layers of racism, homophobia,
Nam Kiwanuka: 甚至还有情感劳动,因为你听到的那些故事。
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>> and even the emotional labor because >> the stories that you're hearing.
Farrah Khan: 是的。然后你再加上情感劳动和智力劳动,因为你得不断地向医疗系统里的人解释如何照顾你,然后他们还期望你教他们,或者保持安静。但很多时候,这被看作是“可教的时刻”,你知道,以一种让人非常不舒服的方式。所以,当我正在接受乳腺癌和宫颈癌治疗时,会收到医生的私信。嗯,“哦,你之前给我反馈时提出的见解真的很有帮助。你能看看我整理的这些幻灯片吗?”
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>> Yes. And then you add in the emotional labor and the intellectual labor of constantly having to explain to people in the medical system how to care for you and then their expectations for you to teach them >> or be quiet. or be quiet. But a lot of teachable moments being seen as teachable, you know, in a way that felt really uncomfortable. So, getting DMs from doctors while I'm going through breast cancer treatment and treatment for cervical cancer. Um, oh, your um your insights you gave me when you were giving me feedback about my care were really helpful. Can you look at these slides that I put together?
不。或者在你提出投诉后,被医院高层管理人员要求……在我投诉说,他们给我安排了一位社工,当我问他们有什么培训来与LGBTQ人群或有色人种合作时,他们说没有,我说那我们可能不适合一起工作。当我向医院系统投诉这件事时,他们想让我联系他们的公平团队,提供我的反馈,以便他们能建立一个更好的医院。但这并不总是我的工作。我只是想要一个社工,以便我的心理健康能得到支持。所以,做所有这些教育工作需要花费太多精力。
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No. or being asked by upper management in a hospital after you made a complaint um after I made a complaint of I was set up with a social worker and when I asked them what training they had to work with LGBTQ people or with racialized people, uh they saidnone and I said I don't think we'd be a good fit to work together then. And when I made a complaint about that um to to the hospital system, they wanted me to connect to their equity team to give my feedback so they could build a better hospital. But that's not always my job. I just want a social worker so I have support with my mental health. So it takes so much work to do all this education
有一段时间我放弃了,不再说什么了。比如,我接受放疗时,因为出血很多,我穿着经期内裤。在一次核磁共振检查中,我说:“我来月经了,穿着经期内裤。这样进机器可以吗?”他们说:“哦,不行。你得脱掉。”所以,我没穿内裤,他们也没给我卫生巾,我就在核磁共振的检查床上自由流血。嗯,在那期间,血流得到处都是。没有卫生巾,甚至连个医用垫子都没在我身下垫。
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that there was a point where I gave up on it and I didn't say things. So, example, um I got radiation and I wore period underwear because I was bleeding a lot. Um and in one of the MRI tests, I said, "I have my period and um I'm wearing period underwear. Is that okay to go through the machine?" And they said, "Oh, no. You you got to take those off." So, I had no underwear on and uh they didn't give me a pad, so I just free blood on the MRI table. Um during that, like just bled everywhere. No pad, not even like a medical pad on the on the bottom of me.
Nam Kiwanuka: 这太非人化了。
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>> It's dehumanizing.
Farrah Khan: 你不是一个人。你就像在一个冷冻肉库里。很多治疗都感觉是那样的。就像,当你问我在治疗期间的心理健康状况时,我很难回答你,因为我必须麻痹自己,按部就班地走流程。我还在照顾我的儿子。我的伴侣职位很高,他们还得工作。我们找不到保姆。你知道,我们东拼西凑,但这对我儿子来说真的很艰难。所以,在我最初接受治疗时,我还在做一些育儿工作,同时进行化疗和放疗。找到保姆后情况有所好转,但那花了很长时间。
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>> You aren't a human. You're in a meat locker. A lot of the treatments felt like that. Like it was really hard when you asked me about my mental health during the treatment. I couldn't answer it for you initially because I had to numb myself out so much and go through the motions. I was still caregiving for my son. My partner has a highprofile position and you know they still had to work. We couldn't find a caregiver. You know we were patchworking things but it made it really hard on my son. So, I was still trying to do some child care while going through chemo and radiation when I initially was going through treatment. It got better once we found a caregiver, but it took a long time.
面对死亡:用社群和幽默对抗恐惧
Nam Kiwanuka: 你提到,当你发现第一个癌症时,他快要四岁了。
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>> Well, you mentioned that um when you found out the first cancer, he was about to turn four.
Farrah Khan: 是的。
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>> Yeah.
Nam Kiwanuka: 你在庆祝他的生命。
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>> You're celebrating his life.
Farrah Khan: 嗯哼。
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>> Mhm.
Nam Kiwanuka: 但你却面临着……或许……你生命的终结。你如何……
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>> But you're facing perhaps the end of yours. How do you
Farrah Khan: 我很抱歉。不,是这样的,当你在网上搜索,因为人都会这么做,你知道,深夜里,你会想,“我会死吗?”当你查小细胞癌时,不到30%的人能活下来,他们说0到30%的人能活下来。我必须接受我可能会死这个事实。
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>> I'm sorry. No, it was it was um when you look up online because as one does, you know, late at night, you know, will I die? When you look at small cell cancer, less than 30% of people, they say 0 to 30% of people live with it. I had to come to terms with the fact that I would die
因为我不想如果真的死了,那会是一个打击。我马上立了遗嘱。我做了决定。你知道,我把一切都安排好了。我想,我内心的组织者会觉得,“这是一种控制。”我还为我的朋友们办了个派对,告诉他们我得了宫颈癌。我们称之为“感谢你的宫颈”。
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because I didn't want it to be a shock if I did. I did my will right away. I made decisions. You know, I I had that all set up. I think, you know, the organizer in me was like, "This is control." I also threw a party for my friends to tell them that I had cervical cancer. Um, we called it Thank You for Your Cervix.
Nam Kiwanuka: 这个名字很不错。
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>> That's pretty good.
Farrah Khan: 是的。谢谢。我本想做一个带卵巢的宫颈蛋糕,但没能做成。我很难过。但我们告诉了我的朋友们,那变成了一场非常美好的,不是吐槽大会,而是每个人轮流拿着麦克风,告诉我他们会支持我。我们实际上把人们聚集在一起,因为他们很多人彼此不认识,我们希望这个关怀团队能互相认识,这样他们也能互相支持。由此产生的是最美好的事情。超过35人加入了一个我们创建的关怀网站,他们会报名参加我的预约。这让看病变得有趣。
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>> Yeah. Thank you. I wanted to have like a cervical cake with ovaries, but no, we couldn't get a cake made. I was really sad. But we told my friends and we it became this really beautiful not roast but everybody you know took turns taking a mic and just telling me that they're going to be there for me and we actually brought together people because a lot of them didn't know each other and we wanted the care team to know each other so that they also could support each other and what came from that was the most beautiful thing. It came over 35 people joined um like a care website that we had and they would sign up for appointments. It made appointments fun.
最初,第一次预约时,我取消了陪同的人,因为我说我没事,你不需要来。认真对待自己是很难的。我不知道你对自己的健康是什么感觉,但有一段时间,直到去年十一月,我才真正相信自己病得那么重。我太专注于照顾别人,心想:“应该没那么糟,如果真的那么糟,我就会死。”因为感觉就该是那样。这其中有很多需要解开的东西。
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Initially um the first appointment I canled the person coming cuz I said I'm fine. You don't need to come. It's really hard to take yourself seriously. I don't know about you with your health, but there was a period of time up until I would say this November that I really believed that I was that sick. Like I was so about caring for other people, being like, "It can't be that bad, and if it is, I'll die." Because it just felt like it called for that. And it was so much unraveling of that piece. Have you thought about why that was for you?
创伤的连锁反应:当旧伤在治疗中被唤醒
Farrah Khan: 我是儿童性虐待的幸存者。当你是一个儿童性虐待的幸存者,这与一次性的性侵犯或强奸非常不同,因为它通常是由你认识或爱的人所为。在我的案例中,是我的祖父们。
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>> I'm a survivor of child sexual abuse. And when you're a survivor of child sexual abuse, it's very different than a one-time sexual assault or rape because it's usually by someone you know or love. And in my case, it was my grandfather's.
最初没有人相信我。所以你就像在尖叫,说这很糟糕。过了几十年人们才相信我。即便在那之后,直到今天,我也不认为他们理解事情的严重性,因为听他们作为家庭成员,因没有在我需要时保护我而牵涉其中的事情,对他们来说太危险或太难接受了。
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And no one believed me initially. So you're like screaming like this is bad. And it took decades for people to believe me. And even after that, to this day, I don't think they understand the scope because it's too dangerous or too hard to hear what they are implicated in as a family by not protecting me when they needed to.
所以我想,当我说我得了癌症时,那个小小的我几乎像是在想,我是不是在小题大做以博取关注,或者这到底是不是真的?感觉真的就是那样,因为它太疯狂了。而且,我认为这也是第一次,癌症诊断与我经历过的任何其他事情相比,人们确实相信你,并更认真地对待它,比如健康问题。
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And so I think little me when I said that I had cancer is almost like am I making this a big deal to get attention or like is this real? Like it really feels like that because it's just so wild. And it's also the first time I think cancer diagnosis compared to anything else I've ever had, people do believe you and take it more seriously like health than any other thing.
Nam Kiwanuka: 你认为这是为什么?
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>> Why do you think that is?
Farrah Khan: 因为它是科学的,是事实的,你知道,是基于证据的。相比之下,当人们谈论性暴力时,你本身就是证据。我说到创伤这件事,是因为我认为理解这一点很重要:如果三分之一的女性曾遭受过某种形式的暴力,那么我们中很多人走进医疗中心时,都是幸存者。然而,医疗系统并没有为幸存者做好准备。
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>> Because it's scientific. it's factual >> and you know that's um evidence-based, you know, compared to you being the evidence, you know, when people talk about sexual violence. And I say the trauma piece because I think it's important to understand that if one in three women have been impacted or subjected to some form of violence, then we are walking into health care centers, many of us, as survivors. Yet the health care system is not set up for survivors.
Nam Kiwanuka: 这让我倒吸一口凉气,因为我立刻想到的第一件事就是你的身体会记住。而且有时候,当你去……嗯,大多数时候,当你走进医生的办公室,首先,那是一对一的。然后,你必须脱掉衣服,然后就像你的身体……他们对女性做的检查,你知道,这可能听起来有点露骨,但你必须张开双腿。
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That took my breath away because um immediately the first thing I think of is the your body remembers >> and sometimes when you go well most times when you go into a doctor's office first of all it's one one person with one person. Um, and then the act of having to take off your clothes and then just like your body like this the test that they do on women like you you know this might sound a little graphic but you have to spread your legs.
Farrah Khan: 我不觉得这露骨,人们需要知道。
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>> I don't think it is graphic like people need to know
Nam Kiwanuka: 人们,对。而且,这又像是,谈论这些事情有一种羞耻感,但我的身体总是会僵住。
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>> people right and it's again it's like there's a shame around talking about these things but like my body always froze.
Farrah Khan: 是的。
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>> Yeah.
Nam Kiwanuka: 有些医生会说,有什么问题吗?快点。尤其是当你怀孕的时候,有10个人走进你的房间,把手伸进你的……你知道,阴道里,然后……
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>> And some doctors would be like what's the problem? Like come on. And especially when you're pregnant >> and you have like 10 people walking into your room, sticking their hands up your, >> you know, vagina and like and you
Farrah Khan: 抱歉,我好像在替你即兴发挥了。这太疯狂了。
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>> Sorry, I'm like ad living for you. It's like madness,
Nam Kiwanuka: 是的,对吧?就像……很难一直说,嘿,你能……你知道……
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>> you know, right? like it's like and uh it's hard to keep telling saying hey can you you know
Farrah Khan: 拜托,这就是为什么,这就是为什么我的……即使作为一个社会,我认为我们还没准备好进行很多这样的对话,因为那会迫使我们去看那些在角落里、在黑暗中的事情,而且……
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>> please this is why this is why my b even as a society I don't think we're ready to have a lot of these conversations because uh then it forces us to look at the things that are in the corners in the dark um and
Nam Kiwanuka: 我认为这对人们来说有点太多了,即使只是谈论女性健康。
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>> I think that's a bit much for people even just talking about women's health
Farrah Khan: 哦,是的。如果我谈论乳腺癌,人们会更愿意听我谈,因为那是你的乳房,而乳房并不完全属于你。它们属于公众,对吧?它们属于男人。它们是社会上被珍视的东西。但是你的阴道、你的子宫颈、你的卵巢、你的输卵管,那就像是,你知道,太露骨了,太过分了。人们在这些治疗后会出现萎缩,放疗、化疗、内部放疗,这些会立刻导致我进入更年期,但没有人真正告诉你这些信息。
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>> oh it's you know Yeah, if I talk about breast cancer, people are more apt to feel comfortable me talking about it because it's your breasts and breasts don't fully belong to you. They belong to the public, right? They belong to men. They are something that are cherished in society. Um but your vagina, your cervix, your ovaries, your fallopian tubes, it's like, you know, that's too graphic, that's too much. the fact that people get atrophy after these treatments, radiation, chemo, internal radiation, um you know, they cause menopause in me right away and no one really gives you that information.
但回到创伤这件事,我会再回来说更年期。我认为创伤这部分非常重要,需要理解,因为我必须不断地说:“我是一个创伤幸存者。我需要你用不同的方式来做。”比如,当我接受乳房放疗时,你的乳房是完全暴露的,你在一个有两个人的房间里,他们会在上面放一小片纸,像一张能粘住的小纸巾。
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But going back to the trauma thing, I'm going to come back to that menopause thing. Um, I think the trauma piece is really important to understand because I had to consistently say, "I'm a trauma survivor. I need you to do that differently." So, for example, um, when I was getting radiation on my breast, your breast is completely exposed and you're in a room with two people and they put a little piece of paper on top of it, like a little paper towel that kind of sticks.
我记得那个技术员走进来,直接把它撕掉了。于是我又一次暴露了。我放声大哭。然后她就像是:“怎么了?”我说:“那真的很没必要。你能不能用一种温和的方式来做?”我不得不告诉她我需要什么。然后你知道吗?她哭了,我也哭了。我们因此有了一次美好的对话,关于创伤知情可以是什么样的。她说,我接受过这方面的培训,但我并没有时时刻刻都在实践。那是一次艰难的对话。但那是我在这个过程中经历的许多对话之一。
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And I remember the technician coming in and just ripping it off. And so I was exposed again. And I burst into tears. And then she was like, "What?" And I said, "That was really uncalled for. Is there a way you can do that in a gentle way?" And I had to talk her through what I needed. And you know what? She cried and I cried. And we had this beautiful conversation from it around what trauma informed can look like. And she was like, I've been trained in this, but I'm not practicing it all the time. And it was a hard conversation. Um, but it was one of many that I had during this process.
但有时我感觉自己太麻烦了。我不知道你或者其他人是否也有这种感觉,但我感觉自己太麻烦了。所以我就像,我是个创伤幸存者,我是酷儿,我是有色人种。你知道,我需要你做这些事。但问题是,我们不是碎片或部分。我们是一个完整的人。我不是一块拼布被。
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But I felt like too much sometimes. I don't know if you or other people feel that way, but I felt like too much. So I'm like, I'm a trauma survivor. I'm queer. I'm racialized. You know, I need you to do these things. But the thing is is that we're not fragments or fractions. We're a whole person. I'm not a patchwork quilt.
我是一个完整的人,我需要你用我应得的关怀来对待我。但我麻木了很多。我确实在那些时刻使用了我作为创伤幸存者、作为儿童性虐待幸存者学到的技巧,只是为了解离、僵住或麻痹自己,以便能够生存下来。有那么多人需要不断地……你知道,他们没能进入并检查我的阴道,检查我的宫颈。
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>> I'm a whole person and I need you to treat me with the care that I deserve. >> But I numbed out a lot. I definitely used the skills that I had learned as a trauma survivor, as a child sexual abuse survivor in those moments to just disassociate or freeze or numb myself to be able to survive. The amount of people that were consistently needing to do um you know, they failed to go in and look at my vagina, look at my cervix.
但有一刻我必须说“停”。因为我得去看很多专家,寻求不同方面的帮助,你知道,那些后遗症,那些之后发生的小事,他们会说……那些事本身……抱歉,我的脑子有点模糊了。你知道那个东西,那个叫什么来着……你接受治疗,然后之后发生的事情,就像……
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But there was a point where I had to say stop. Um because I had to go to a lot of specialists to get help on different parts, you know, the after effects, the little small things that happen afterwards that they would say which in themselves the the things that would happen after I'm sorry, my brain is getting fuzzy. You know the thing, what's the thing that's called um you go for treatment and then the thing that happens after it's like
Nam Kiwanuka: 后续预约?
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>> the follow-up appointment?
Farrah Khan: 不,不,不。就像,你知道,你的主要问题是子宫内膜异位症,但是……因为接受治疗而产生的某种后果。那叫什么?
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>> No, no, no, no. like you know like your primary thing is endometriosis but the the there's something that happens as a result of getting a treatment. What's that called?
Nam Kiwanuka: 这是我的脑雾。
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>> This is my brain fog.
Farrah Khan: 嗯……
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>> Um
Nam Kiwanuka: 化疗脑雾是真的。
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>> he chemobrain fog is real.
Farrah Khan: 是的。我们……我也很想上厕所。我可以去上个厕所吗?可以吗?可以吗?
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>> Yeah. We >> also have to pee really bad. Is it okay if I pee? Can I pee? Can I pee?
黑暗中的微光:癌症带来的意外收获
Nam Kiwanuka: 听着,在这期间也发生了一些非常好的事情。我想……
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>> Listen, there are some really good things that happen during the period. And I think like
Farrah Khan: 比如什么?
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>> like what
Nam Kiwanuka: 发生了什么好事?嗯,我和我配偶的关系变得不同了。我想我曾是我们儿子的主要照顾者,你知道,因为他是在疫情前出生的,然后当他们还小的时候,他们想要妈妈,你知道,他们……抱歉。是的。我们叫妈妈和妈咪,但你知道,他们想要一个家长,尤其是那个母乳喂养他们的家长。
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>> good things that happened? Um my spouse and I have a different relationship. Uh, I think I was the primary parent of our son, you know, because he was born right before the pandemic and then just when they're little, they want their mommy, you know, they're sorry. Yeah. We call mama and mommy, but you know, they want they want one parent, especially the parent that that breastfeeds them
Farrah Khan: 因为他们得活下去。
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>> because we're they have to survive.
Nam Kiwanuka: 是的,是的。他们就像,“我爱你。给我吃的。”我母乳喂养了很长时间。但是当我生病时,我记得我的伴侣说……因为我做手术时会把他们送走,因为我不想让我儿子看到我那么痛苦。所以我把他们送走了,这也让人心碎,因为他们就像去度一个可爱的假,而你,你知道,没有。
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>> Yeah. Yeah. Yeah. They're like, I love you. Give me food. Um, and I breastfed for a long time. And uh but when I got sick, I remember my partner saying I cuz I send them away when I would have surgeries cuz I didn't want my son to see me in that much pain. Um so I sent them away, which is heartbreaking, too, cuz you're they're like going on a cute vacation and you're, you know, not um
但我记得我的配偶对我说:“我做不到。你才是更好的家长,你知道,你……我做不到。他会想要你的。”他们一起离开了,我的伴侣对我说:“我觉得没问题。我觉得没问题。他做得很好。”我心想:“你做得很好。”所以,这里面也有关于照顾和分担照顾责任的部分,有时候你会有点……不是囤积,而是你会觉得,“我能做这个”。
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but I remember my spouse saying to me, "I can't do this. Like you're the better parent, you know, like you're you're just I can't do this. He'll want you." and they went away together and my partner said to me, "I think it's okay. I think it's okay. Like, he's doing really great." And I'm like, "You're doing really great." So, there's that piece of also caregiving and sharing caregiving that sometimes you kind of not hoard, but you're kind of like, I can do this
Farrah Khan: 有点难。是的。
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>> kind of hard. Yeah.
Nam Kiwanuka: 是的。或者觉得……
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>> Yeah. Or like think
Farrah Khan: 你应该做。
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>> you're supposed to do.
Nam Kiwanuka: 是的。或者抢先一步去做。我不知道我能寻求帮助。我生儿子的时候,没有寻求帮助。我在医院里,你知道,和我的配偶在一起,但没有其他人。我不知道我可以从朋友那里得到支持。我没有要求。然后疫情发生了,我们非常孤立。
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>> Yeah. Or sweep in to kind of do the thing first. Um, I didn't know that I could ask for help. When when I gave birth to our son, I didn't ask for help. I was in the hospital, you know, with my spouse, but no one else. Um, I didn't know that I could get support from friends. I didn't ask for it. And then the pandemic happened and we were really isolated.
举办那个“感谢你的宫颈”庆祝活动,把我们爱的人聚集在一起,能够说,我得了这种非常罕见且非常严重的癌症。你能帮我吗?
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to have that celebration, the thank you for your cervix celebration, bring together people we love and be able to say, I have this cancer that's very rare and very serious. Can you help me?
这让我感到谦卑,因为人们就是出现了。我曾在我生命的其他方面帮助过的人,在我化疗前一天拿不到药,而且我太虚弱走不动路时,在网上联系我,因为我住得离其中一家医院很近,可以走过去,虽然化疗期间我可能不该这么做,但我当时就是想来回走。
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It was kind of I was kind of h I was no kind of I was humbled humbled because people just showed up. I had people I've helped out in other parts of my life. um reach out online when I couldn't get the medication the day before I had to do chemo and I was too weak to go walk there cuz I live so close to one of the hospitals I can walk to it which I probably shouldn't have during chemo but I was like I'm just going to walk back and forth
Farrah Khan: 我能行。
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>> I can do it.
Nam Kiwanuka: 是的,完全是那种荒谬的心态。他们去帮我拿药。所以,这是个我从未见过的人,但我帮助过他们的伴侣,他们说:“哦,是的。我们住你附近。我去帮你拿药,然后送到你门房。”
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>> Yeah, totally. That mindset of ridiculousness. Um and they went to go get my medication. So, this is someone I never met before, but I had helped their partner and they said, "Oh, yeah. We live right by you. I'm going to go get your meds and I'll drop them off at your concagege."
Farrah Khan: 听到这个真的很暖心,因为我觉得人们是想帮忙的,但如果你不开口,他们可能会以为你不想或不需要帮助。但是,你知道,对我来说,做母亲,我学到了很多关于自己的东西,因为我总是对人说,做母亲在很多方面都让人非常谦卑。但你想再生一个孩子。你是如何应对癌症诊断后无法再生育的失落感的?
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>> That's really lovely to hear because I think people want to help, but if you don't ask, they maybe assume you don't want to help or need the help. Um, but you know, motherhood for me, uh, I learned so much about myself because I I always say to, um, like motherhood is very humbling in so many ways. Um, but you wanted to have another baby. How did you navigate that loss of not being able to have another baby after your cancer diagnosis?
失去与悲伤:直面生育能力的终结
Nam Kiwanuka: 我还在处理中。那是一种如此深沉的悲伤。
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>> I'm still navigating it. it uh it's such a deep well of grief.
我想知道如果我是异性恋,他们是否会更多地和我谈论这件事。通常,或者说协议是,当你患有我这种类型的癌症并经历那种治疗时,他们会告诉你你的选择。
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>> I wonder if I was straight they would have talked to me more about it. So usually when or a protocol is that when you have the type of cancer that I do and going through that kind of treatment they tell you about your options.
幸运的是,我保存了一些胚胎,因为我们最初是通过体外受精(IVF)的。我们保存了八九个。所以我还有它们。
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I had luckily saved a number of um embryos that we had because we had gone through IVF initially. Um and we had saved like eight, eight or nine. And so I had them,
但我曾以为我会再次怀孕。那是我的目标。我想再生一个孩子。但这个念头没有沉淀下来,我也不让它沉淀下来,我保留着那些胚胎,因为我想,也许可以代孕,或者我不知道,会有朋友帮我怀。
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but I had thought that I was going to be pregnant again. That was that was my goal. I wanted to have another baby. And uh it didn't sink in and I didn't let it sink in like I kept those embryos because I was like maybe surrogacy or I don't know a friend will carry for me.
但我想,直到我去看我的放射肿瘤科医生那天,我才真正意识到。我当时说:“哦,对了,我的月经怎么样了?在这次放疗期间会停一小段时间吗?”她只是看着我,直截了当地说:“不,你的卵巢已经死了。”
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Um but I think it sunk in the day that I went to my you know radiation oncologist and I was like oh yeah so what's happening with my period? Is it going to stop for a little bit during this radiation? And she just looked at me and point blankly said, "No, your ovaries are dead."
好吧。没有人真正为我做过这方面的准备。他们说过我不能怀孕,但我没意识到发生了什么。我想,在那个时候,他们让你进展得太快了。他们会给你一些小册子,但他们让你进展得太快,因为我得的那种癌症太有侵略性了。我们是通过一次扫描才发现我得了乳腺癌的。
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Okay. And no one had really prepared me for that. Like they had said that I wouldn't be able to have like carry a child. Um but I didn't realize that what was happening. I think you just they move you so quickly at that time. They give you some pamphlets, but they move you so quickly because the type of cancer I had was so aggressive. Like, we only found out that I had breast cancer through a scan.
医生们当时都说:“哦,不,这只是个良性的东西,别担心。”当我的一个医生打电话来确认下一次放疗预约时,我正在看活检结果,我对她说:“看起来我确实得了乳腺癌。”
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Um, and the doctors were like, "Oh, no." Like, this is just a benign thing. Don't worry about it. And when my one of my doctors called me to check in about the next radiation appointment I had, I was looking at the biopsy results and I said to her, "It looks like I I do have breast cancer."
再次确诊:在系统漏洞中自我发现
Farrah Khan: 等等,所以是你指出来的……
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>> Wait, so you're the one that pointed out that
Nam Kiwanuka: 是的,是的。因为现在的新系统是,你在……你知道,同时拿到你的结果。
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>> Yeah. Yeah. Because you you get this new system is that you get your results at this, you know.
Farrah Khan: 她当时说:“哦,不,你没有。”然后我说:“不,你看,活检结果出来了。”然后我们就在电话里,事情就这样发生了。她接着说:“好的,给我一秒钟。”她看了看结果,然后说:“哦,是的,你确实得了乳腺癌。”
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>> And she was like, "Oh, no, you don't." And then I said, "Well, no, look, the biopsy results came in." And then we're on the phone as this is happening. And she she goes, "Okay, just give me a sec." She looks at them and she goes, "Oh, yeah, you do have breast cancer."
就这样,一位医生向我证实了我得了乳腺癌。
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And that's how it was confirmed to me that I had breast cancer from a doctor.
Nam Kiwanuka: 这距离你发现自己得了宫颈癌有多久?
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>> And how soon after you found out you had cervical cancer?
Farrah Khan: 一个月。
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>> A month.
大约2%的癌症患者会得第二种癌症。在治疗第一种癌症期间得第二种癌症是极其罕见的。
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It's about 2% of people with cancer get a second cancer. It is extremely extremely rare to get a second cancer during your treatment for first cancer.
Nam Kiwanuka: 而且你还相当年轻,尽管我们看到越来越多的年轻人被诊断出患有癌症。
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>> And you're fairly young >> when we're seeing more young people being diagnosed with cancer.
Farrah Khan: 我想那可能也造成了额外的障碍,因为被轻视了。你太年轻了,不会得这个。
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>> I imagine that probably also created an additional barrier because of being dismissed. You're too young to have this.
Nam Kiwanuka: 是的,是的。就像我最初在2023年1月,有一天我醒来,对我伴侣说:“我得了乳腺癌。我想我得了乳腺癌。”并不是因为我有个肿块什么的。只是一种感觉,我知道这对某些人来说可能很奇怪,但不知道为什么,相信我的感觉以前对我很有用。当我去看医生,最初做宫颈检查或宫颈刮片时,我说:“你知道,我想我可能也得了……我想我得了乳腺癌。”她摸了摸我的乳房,做了检查,然后说:“不,没有肿块。你不需要去做乳房X光检查。”
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>> Yeah. Yeah. Like I when I initially in January of 2023, I woke up one day and I said to my partner, "I have breast cancer. I think I have breast cancer." And it wasn't because I had a lump or anything. It was just a feeling, which I know seems strange to some people, but I don't know, trusting my feelings has worked for me before. When I went to my doctor, um, when I initially had the the cervical test or the cervical scrape, um, I said, you know, I think I also have I think I have breast cancer. And she was like felt my breast, like did a exam and she was like, no, there's no lymphs. You don't need to go get a mammogram.
所以我没有去做乳房X光检查。他们唯一能发现它的方式是因为我必须为我的宫颈癌做进一步的扫描。那时我43岁。这确实很年轻,也让事情变得更加困难。一方面,人们常常不把你当回事,但你又太老了,不能参加年轻人的癌症小组,又太年轻了,不能和老年人在一起。但我常常被安排在主要是老年人的项目中,这给我带来了心理健康上的挑战。不是因为我不喜欢老年人。他们很棒,而且常常以一种很好的方式让我认清自己的位置。关于如何处理我手上的关节炎和治疗带来的髋部疼痛,他们给了我很好的建议。
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And so I didn't go for a mamogram. The only way they caught it was because I had to go for further scans for my cervical cancer. and I was 43 at the time. It is young and that makes it even more difficult. One that people oftentimes don't take you seriously, but you're too old to be in the young people cancer group and you're too young to be with the seniors. But I was oftentimes put in programs where it was mostly seniors and that created a mental health challenge for me. Not because I don't love seniors. They're amazing and oftentimes put me in my place in a really good way. Um, great advice around how to deal with the arthritis that came into my hands um and the pain that went through my hips from all the treatment.
但这很难,因为他们已经退休了,而我却面临着这样一个时刻:我还能回去工作吗?我已经错过了一年。不是错过了一年。嗯,我是和我儿子在一起,但从工作世界的运作方式来看,感觉就像错过了一年。
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Uh, but it was hard because they had retired whereas I was facing this moment of will I be able to go back to work? I had already missed a year. Not missed a year. Well, I was with my son, but it felt like missing a year in terms of the way that the work world works.
Farrah Khan: 当然,你在工作世界里错过了一年。我想我们有时会美化这些事情,但事实是,如果你不在那里,你就是在错过。
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>> Of course, you missed a year in the work world. I think sometimes we sugarcoat these things and it's like if you're not there, you are missing.
Nam Kiwanuka: 是的。
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>> Yeah.
Farrah Khan: 但你不能同时在两个地方。
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>> But you can't be in two places at the same time.
Nam Kiwanuka: 不行,但为此付出的代价是巨大的。“母亲惩罚”是真实存在的。
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>> No, but there's such a penalty for that. The motherhood penalty is real.
Farrah Khan: 然后两年后,我得了癌症。关于你刚才说的老年人的另一部分,我想如果你被分到那个组里,你仍然……你还想再生一个孩子,但如果你在那个老年人类别里,哦,你已经结束了你生命的那一部分,也许他们会因此对你区别对待。
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>> And then two years later, I get cancer. The other part about what you were just saying about the seniors, I think if you're treated in that group too, you still how you wanted to still become have another baby, but if you're in that senior category, oh, you already wrapped that part of your life up and maybe they treat you differently because of that.
Nam Kiwanuka: 嗯,我没觉得他们在那方面对我区别对待。每次我去做扫描,比如核磁共振、CT,他们都会问我是否怀孕了。尽管上面写着宫颈癌,我当时都想做一个别针别在身上。每次都感觉像一记重拳打在肚子上。有时候我就会在核磁共振的检查床上哭泣。
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>> Um, I didn't feel they were treating me differently in that way. Like ev every time I would go for scans, so MRIs, CTS, they would ask me if I was pregnant. Even though it said cervical cancer on, I wanted to make a pin and it felt like a it felt like a punch in the gut every time. Sometimes I would just weep on the MRI table.
成为母亲的渴望与酷儿身份的挑战
Farrah Khan: 你一直都想成为一个母亲吗?
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>> Did you always want to become a mother?
Nam Kiwanuka: 是的。
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>> Yes.
Farrah Khan: 为什么呢?
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>> How come?
Nam Kiwanuka: 是的。我一直想成为一个母亲。我一直都想要。而当你是酷儿时,你总是被以各种方式告知,你不应该成为母亲。人们谈论酷儿的方式,把我们当作异类、待解决的问题、待修复的东西。我在一个穆斯林天主教家庭长大,所以在性方面,两边都有很强的负罪感。我刚出柜时没有得到支持。在某些方面情况有所改变,但在其他方面没有。当我选择嫁给我出色的配偶时,我被一半的家人断绝了关系。
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>> Yeah. >> I always wanted to be a mother. I always wanted that. And when you're queer, you're constantly told that in so many ways that you shouldn't be a mother. The way in which people talk about queer people as deviants, as a problem to be solved, as something to fix. I grew up in a Muslim Catholic family, so guilt was big around sexuality, both sides. And uh I didn't grow up with support when I was first coming out. It's changed in some ways and other ways it hasn't. I was disowned by half my family when I chose to marry my spouse who's wonderful.
当然,他们错过了。那真的很孤立。所以我一直想成为一个母亲。我一直都想,但有很多障碍,包括价格。比如,通过体外受精的过程非常昂贵。你知道,精子的成本,做所有检查看你是否能怀孕的成本,然后去私立诊所,那个过程也非常具有侵入性。
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They're missing out, of course. It was really isolating. So, I always wanted to be a mother. I always wanted to, but there's so many barriers, including price. Like, it's so expensive to go through the IVF process. You know, the cost of sperm, the cost of um getting all the tests to see if you can get pregnant than to the private clinics, the the process is extremely also invasive.
所以这也教会了我如何麻痹自己和解离,说那不疼,说:“哦,没关系。我不需要药物。我能做到。”
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So, it also taught me how to numb myself out and disassociate to say it wasn't painful to say, "Oh, it's fine. I don't I don't need medication. I can do that."
Farrah Khan: 因为这是你真正想要的东西。而且,你知道,一个癌症诊断是毁灭性的,但两个,我想,会摧毁任何人。但是在社交媒体上,你创作了记录你经历的表情包,但这些表情包也让人们发笑。我想我给你发过几次信息说:“哇,在你失去这么多的过程中,你却在给别人带来快乐。为什么呢?”
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>> Because it's something that you really wanted. And um you know, one cancer diagnosis is devastating, but two, I think, would destroy anyone. Um on social media though, uh you created memes that documented what you were experiencing, but these memes also made people laugh. I think I messaged you a few times and said, "Wow, um this like you know, um in the process of you losing so much, you were giving joy to other people. How come?"
Nam Kiwanuka: 这也给我带来了快乐。我必须笑,因为有时候事情就是那么荒谬。而且你还没看到所有的表情包。我甚至还没放出那些表情包。
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>> It was giving joy to me. Like I had to laugh sometimes cuz it's just it was so ridiculous. And you haven't seen all the memes. I didn't even unleash the memes.
Farrah Khan: 也许之后可以出一本表情包书。
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One thing literally in >> maybe a meme book afterward
Nam Kiwanuka: 也许,也许像一本“黑名单”。我的配偶,在我给他们的指示里,如果我死了,就是要发布所有的表情包。
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>> maybe maybe like a burn book. Um, my spouse like in my instructions to them if I had died was to release all the memes.
这在我们家不是开玩笑的,他们知道如果我要死了,必须有个吐槽大会。不能是那种常规的,人们说:“哦,她真可爱。”不,我希望人们吐槽我。那真的是这整个过程的一部分,我必须在其中找到快乐。我会和医生开玩笑,你知道,这其中也有有趣的时刻。
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Like it was not a joke in our house and they knew that if I was going to die that there had to be a roast. Like it could not be like a regular regular thing where people were like, "Oh, she was so lovely. No, I want people to roast me." And and that was really a part of this that I had to have joy throughout it. I would make jokes to, you know, with the doctors, you know, there were funny moments with this like um
我的配偶有一次陪我去看病,在我开始化疗前,我对医生说:“还有什么我需要知道的吗?”他想了一下,说:“哦,是的,你化疗期间要确保使用避孕措施。”我看了看我的伴侣,又看了看那个显然也是酷儿的住院医生。然后我只是看着那个医生说:“我是同性恋。”同性恋。
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my spouse was with me uh at one of the appointments before I started chemo and the doctor I said to them, you know, is there anything else I need to know? And you know, he thought for a second, he's like, oh yeah, you need to make sure you use birth control during chemo. And I looked at my partner and I looked at the resident who was obviously queer as well. And I just looked at the doctor. I said, "I'm gay." Gay. And he with
Farrah Khan: 用大写的G。
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>> a capital G.
Nam Kiwanuka: 是的,一个大写的G,一个重音的G。他看着我,说:“是的,那也许就不用了。”你知道,所以那一刻就很有趣。你必须笑,你知道吗?你必须在其中找到幽默。
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>> Yeah. A capital G, a hard G there. And he looked at me and he was like, "Yeah, so maybe not that." You know, and so like it was just it was funny at that moment. And you have to laugh, you know? You have to find humor in it.
就像最近,我在一家医院做检查,他们说:“好了,换上这个,然后我们做手术。”他们离开后,把所有的病号服都锁在一个玻璃柜里,所以我没法换衣服。我当时想:“哦,好吧,我得准备好。”于是我拿了一张床单,裹在我赤裸的身体上,然后就准备好了。
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And it's the same as the thing like uh these things are always going to be funny to me. I have to laugh even like just recently I had a test at a hospital and they're like okay get changed into this you know get changed and then we'll do the procedure and they left and they had locked all the robes in a glass cabinet so I couldn't get changed. And I was like oh well I need to get ready. So, I just took a sheet, wrapped around my naked body, and then was ready to go.
医生回来后,他说:“好了,去用这件袍子。我把它拿出来。”但我当时就想:“好吧。”就像,你知道,Jetu 假日,我当时就像在 Jetu 假日。我就像,没什么能比得上廉价医院时光。就像你只是……我不知道。或者……
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And the doctor came back and he was like, "Okay, go use this robe. Let me get this out." But I was just like, "All right." It was like, you know, the jetu holidays like I was jet holiday at that moment. I was like, nothing can be like discount hospital time. Like you just like I don't know. Or like
Farrah Khan: 生活在继续。
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>> life continues.
Nam Kiwanuka: 生活在继续。我爱伊萨·雷(Issa Rae),她当然是《不安感》(Insecure)的主演。她在《不安感》第一集里为她的朋友写了一首关于她有多“破碎”的说唱歌曲。我发誓我一直放那首歌,因为我的也太破碎了。我会给每个人放那首歌。我会说:“这是我们开始化疗前的歌。”我当时就像那样到处走,那是我的主打歌。确实是。所以,是的,你的一部分是破碎的,但你必须找到方法把它们带回来。我拒绝仅仅是破碎的,因为有一种关于我们应该成为什么样的叙事。
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>> Life continues like you know. Um, I love Issa Ray, who of course is from um, Insecure. And she, her first episode of Insecure, she makes a rap song about her friend called Broken And I swear I played that all the time because mine was so broken. And I would play that for everybody. I'd be like, "This is our song before we start chemo." Like, I was just like marching around like that was my jam. And it was. And so, like, yeah, parts of you are broken, but you have to find ways to bring them. And I refuse to just be broken because there's a narrative of what we're supposed to be.
但我告诉你,那只管用了一年。只管用了一年,因为我脑子里有个想法,我可以二合一。我可以把乳腺癌和宫颈癌的治疗,小细胞、罕见的宫颈癌治疗,都在一年内完成。所以我催促医生,在我完成了六个月的强化治疗后,那么多的化疗,那么多的侵入性手术。
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But I will tell you that that worked for only a year. It worked for only a year because I had it in my mind that I could do a twoin- one. I could do breast cancer and cervical cancer treatment, small cell, rare cervical cancer treatment, all in one year. So I pushed the doctors after I was done six months of intensive treatment like so much chemo, so many invasive um surgeries. Uh and then
我记得十二月打电话给他。那时我刚做完化疗和所有小细胞宫颈癌的治疗,我说:“好了,我准备好接受乳腺癌治疗了。我们能多快开始?”他们说:“嗯,等到一月吧。”我当时很生气,因为我想把它做完,因为我想回去工作。
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I remember calling him in December. So I was just done chemo and all the treatment for cerv small cell cervical and I was like okay I'm ready for my breast cancer treatment. How soon can we do it? And they're like uh let's wait until January. And I was upset at that time because I wanted to get it done because I wanted to go back to work.
与悲伤为友:学习感受而非逃避
Farrah Khan: 我是说,我们生活的这种工作文化,你知道,你对我们的谈话非常慷慨,我们的时间快到了,我想这可以成为另一整集的话题,关于当你应对疾病时,但你仍然必须在工作中、在家庭中出现。你提到你为《环球邮报》写了一篇专栏,我只想读一部分你写的内容。
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>> I mean, the work culture we live in, uh, it's, you know, I I you've been so generous with our conversation and, um, we're running out of time and, uh, you I think this could be like a whole other episode about where when you're navigating an illness, but you still have to show up at work, uh, in your family. And you mentioned that you wrote a column for the Global Mail and I just wanted to read part of what you wrote.
你写道:“在癌症之前,我曾在悲伤的边缘行走。那是我不曾完全允许自己去感受的东西。总是太尖锐,太原始,不敢触碰。应对这些疾病让我与悲伤成为朋友。我置身其中,为浪潮的到来做准备,这样我才能驾驭它们。”关于悲伤,你学到了什么,改变了你与它的关系?
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You wrote, "Before cancer, I had walked the edges of grief. It was something I didn't fully allow myself to feel. Always too sharp, too raw to touch. Navigating these illnesses has allowed me to befriend grief. I sit within it preparing for the waves so I can ride them." What have you learned about grief that has changed your relationship with it?
Nam Kiwanuka: 是的,我学会了真正去感受它。我想以前……以前它是不方便的。得了癌症后,我不能工作,所以突然间,我只剩下我自己。
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>> Yeah, I've learned to actually feel it. I think before before it was inconvenient with cancer I couldn't work during cancer so all of a sudden I was left with myself
我的朋友们称之为“微观资本主义”,他们有时会给我一些小项目做,这样我就不会发疯。但我必须面对我的悲伤,以及那些与癌症相关的、我还没处理的其他事情的悲伤。比如我的父亲,他死于胰腺癌,因为我被家族那一边断绝了关系,他们不和我说话,我不知道他埋在哪里。我不知道。
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my friends called it micro doing capitalism for me sometimes they would like give me little projects to do so that I would not be fanatic um but I had to sit with my grief and grief that grief that I hadn't processed from other things that were connected to cancer. So my father when he died of pancreatic cancer because I was disowned that whole side of the family um didn't talk to me and you know I don't know where he's buried. I don't know.
我知之甚少。但悲伤在那个时候,在癌症期间来了,因为突然间,我被问及我的基因,因为胰腺癌,如果你有,而且你家里有卵巢癌患者,这也和乳腺癌的BRCA1基因(BRCA1: 一种与遗传性乳腺癌和卵巢癌风险显著相关的基因)有关。所以我做了基因检测,但我不知道我家族的病史。
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I don't know much. But the grief came during that time because during cancer because all of a sudden I was being asked about my genetics because pancreatic cancer um if you have it um and you have a family member with ovarian there's a connection also to breast cancer bracka 1. And so I was getting genetic testing and I didn't know the history of my family.
这就是恐同症与医疗系统的交汇。我不得不在癌症治疗期间,为失去整个家族那一边而悲伤,因为我还没触碰过那件事。我还没触碰过。
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And that's homophobia meeting up with the medical system. And I had to grieve that loss of my whole side of a family during cancer treatment because I hadn't touched that yet. I hadn't touched that.
或者,因为不能再生一个孩子而感到的悲伤,以及我们家在我怀孕时经历的恐同。人们评论我怀孕的消息,说那是可憎的,说我们的孩子不应该存在。而我们的孩子应该存在。我们的儿子是如此快乐,如此美好。
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or the grief of not being able to have another child and the homophobia that we experienced as a family while I was pregnant. People commenting on our news that I was pregnant saying that it was abomination that um our child shouldn't exist and our child should exist. our son is so joyful, so wonderful.
看到悲伤是我生活的一部分,癌症教会了我不要像我说的,坐在它的边缘或走在它的边缘,而是真正地活过它,我不能把它分开。
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>> And seeing that grief is a part of my life and that cancer's taught me to not, as I said, sit in the edges of it or walk the edges of it, but to actually live through it and that I can't separate it.
“我想活得像个真正活着的人”
Farrah Khan: 通过这些过程,你对自己有什么了解?
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>> What have you learned about yourself through these processes?
Nam Kiwanuka: 我学到我无法控制任何事,死亡可能会来临。我对死亡和与之相关的悲伤变得坦然。我也了解到自己,哇,我喜欢取悦别人。所以我必须克服很多想要让别人,比如医生,感到舒服的欲望,并且我可以在我的身体里保持临在。我想我以前并没有那么临在于我的身体里,因为要生存下来,我必须解离。然后突然间,当你在康复时,人们会问:“哦,这里疼吗?哪里疼?”你就会说:“我不知道。我不知道怎么告诉你。你想让我从悲伤开始说起吗?”如果我开始谈论悲伤,就像拉一根线,然后一切都打开了,解开了。
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I learned that I can't control anything and that death might come. I became comfortable with death and grief around that. What I learned about myself too was that wow, I like to people please. So I had to work through a lot of wanting to make other people feel comfortable like doctors even and that I could be present in my body. I don't think I was that present in my body before because to survive what I survived, I had to disassociate. And then all of a sudden when you're healing, people are like, "Oh, does this hurt here? Where is the pain?" And you're like, "I don't know. I don't know how to tell you that. You want me to start with grief?" If I start talking about grief, it's like pulling a thread and everything opening, unraveling.
但我必须让它解开,因为我想完整地生活。我想活得像个活着的人。奥德丽·洛德(Audrey Lorde),她是一位癌症幸存者,一位黑人女权主义诗人和作家,她谈到想让自己的生活像一颗彗星。在我接受治疗时,我深深地记住了她的话,想要充实地生活,但同时学到我必须慢慢来,我不能按照别人的康复节奏或速度来。我按照自己的节奏,没有人能塑造它,除了我。
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But I had to let that unravel because I want to live whole. I want to live like I'm alive. And um Audrey Lord, who's a survivor of cancer, was a survivor of cancer and a black feminist poet and writer and everything. She talked about wanting to live her life like a comet, you know, and I took her her words so deeply when I was going through my treatment, wanting to live life fully, but learning that I have to move slowly, that I don't move at other people's pace of healing or pace of healing. I move at my own and no one gets to shape that but me.
我在癌症期间与友谊斗争得很厉害。我可以有朋友,我的关怀团队很棒,但没有多少人能理解我正在经历什么。我不想和癌症患者交朋友,因为通常如果我这么做了,当他们开始谈论他们的治疗时,和我的不一样,尤其是我作为一个患有两种癌症,其中一种非常罕见和具有侵略性的人。
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I really struggled with friendship during cancer. I could have friends uh my care team was amazing but not many people could understand what I was going through. I didn't want to make friends with people with cancer because often if I did when they started talking about their treatment it wasn't the same as mine especially as someone with two cancers and one being very rare and aggressive.
我在治疗期间交了两个朋友。一个比我大很多的女人,正在与癌症进行第二次斗争,第二次癌症治疗过程。另一个和我年龄相仿的女人,有两个年幼的孩子。
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I ended up making two friends during my treatment. One, a woman that was much older than me on her second battle with cancer battle second cancer treatment process and another woman who was around my age with two young children.
她们都去世了,一个接一个,就在六月和七月。她们的葬礼接连举行,一个周五,一个周六。然后就在这个周六,我的岳父去世了。
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both died um a one after another just uh in June and July. Their funerals back toback literally a Friday and a Saturday and then just this Saturday my father-in-law passed away.
所以我现在怎么样?在我治疗期间,有几次我想死。有些治疗计划是意料之外的。有几次我只是想:“哦,是的。就这样结束了。”然后又会冒出新的事情。很多人一开始都希望你活着。所以他们会说:“你会没事的。”我当时也有点像:“是的,当然。”过了一段时间,我开始说:“也许我不会没事。”
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So how am I doing? There was times during my treatment that I wanted to die. There was treatment plans that weren't expected. There were times where I just thought, "Oh, yeah. This is done." And then a new thing would pop up. And so many people at first want you to be alive. So they're like, "You're going to be fine." And I kind of was like, "Yeah, of course." And after a while, I started saying, "Maybe I'm not going to be fine."
并且要对所有这些事情感到坦然。但这个朋友,我的姐妹,和我年龄相仿的希拉·科拉(Sheila Cola),她想活在每一天。她想活下去,而我们俩中,我才是那个脾气暴躁的人。
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And it's getting comfortable with all those things. But this friend, my my sister who was my around my age, Sheila Cola, she wanted to live every day. She wanted to live and I was the chromagin out of the two of us.
但现在她走了,我想带着她一起走。所以我现在怎么样?我活着。这和我生命中很多人都不一样。所有和我最亲近的人都死了。
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But now that she's gone, I want to carry her with me. So, how am I doing? I'm alive. And that's so different than so many people in my life. All the people that were closest to me have died.
所有和我最亲近的、患有癌症的人,在过去三个月里都死了。
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um that all the people closest to me who had cancer are dead in the past three months.
所以我在这里,我在努力,我活着。我正在重返工作岗位,不管那是什么样子。我在阳光下牵着我儿子的手。
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So, I'm here and I'm trying and I'm alive. I'm going back to work, whatever that looks like. I'm holding my son's hand in the sun.
我可以抱着他,看他制作魔药。就在最近,他做了一瓶魔药。我问他:“这瓶新的是什么?”他说:“这是‘不死魔药’,如果你把它喷在某人身上,他们就不会死。”
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I get to cuddle with him as he makes potions. Just recently, he made a potion. Um and I asked him, you know, what's what's this new one? And he said, "It's the don't die potion, and if you spray it on someone, they won't die.
不仅仅是我一个人在处理这两年的事情。他也是。看着他为他的祖父悲伤,处理死亡,谈论死亡,让我更想活下去,因为我想能继续和他谈论那些事情。我想牵着我配偶的手。我想和他们慢舞。
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It's not just me who processed this whole couple years. It was him, too. And watching him grieve his grandfather and process death and talk about it has made me want to live more because I want to be able to keep talking to him about those things. I want to hold my spouse's hand. I want to slow dance with them.
但现在我怎么样?我第一次扫描结果清晰,我不知道该怎么办。当我再次对生活感到兴奋时,我在等待另一只靴子落下。另一方面,我对生活感到兴奋。
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But how am I doing right now? I'm clear scans for the first time, which I don't know what to do with. I'm waiting for the other shoe to drop when I get excited about life again. On the other hand, I'm excited about life.
所以我现在怎么样?我活着。
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So, how am I doing? I'm alive.
医疗系统的缺失:一个系统性的崩坏
Farrah Khan: 最后一个问题。非常感谢你分享这一切。你认为医疗系统中缺少了什么,可以让你的经历更容易应对一些?
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>> Just one more question. Thank you so much for sharing that. What do you think is missing in the health care system that could have made what you went through a little bit easier to manage?
Nam Kiwanuka: 只有一件事。
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>> Just one thing.
Farrah Khan: 嗯,你知道……
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>> Well, you know,
Nam Kiwanuka: 只有一件事。嗯……首先,我们在安大略省和加拿大各地的医疗系统正在被削减资金。我亲眼目睹了这一点。我本该做个手术切除卵巢,我当时在医院,静脉注射都打好了,24小时没吃东西,我坐在等候区,你知道,那个躺椅上,我的医生不得不走过来对我说:“你知道吗,我们护士不够,我们不能做这个手术,你得过几天再来。”这是一个直接的例子,是我们的医疗系统资金被削减的影响。
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>> just one thing. Um, >> first of all, our health care system in Ontario and across Canada is being defunded. I'm watching that firsthand. I had a surgery that was supposed to happen to remove my ovaries and I was there Ivy was in hadn't eaten 24 hours and I was sitting in the waiting area you know that chase lounge chess lounge that you sit in no the recliner that you sit in um and my doctor had to come over to me and said you know what we don't have enough nurses we can't we can't have the surgery you're going to have to come back in a couple days and that is a direct example an impact of the defunding of our health care system.
所以有很多事情需要做,围绕着创伤知情护理,围绕着我们医疗保健中的反种族主义,以及从一个交叉性的角度去理解,当一个女人走进医疗系统的大门,无论是医院还是诊所,她都应该得到满足她需求的护理。不是被强加给她的需求,而是她自己的需求,创伤知情护理应该全面普及,因为让我们尊重彼此。
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So there are so many things that need to happen around trauma-informed care, around anti-racism in our health care and understanding from an inter intersectional place that when a woman comes through those doors of a health care system, be it a hospital, a clinic, they deserve care that meets their needs. not the needs that is being prescribed to them but their needs and traumaformed care should just be across the board because let's just respect.
所以需要发生什么?我们需要我们的医疗系统不被削减资金,而是实际上增加资金,逐项增加。我们需要女性的健康得到认真对待。我们知道,女性医生薪水更低。
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So what needs to happen? We need our health care system not to be defunded but actually the money to be increased envelope by envelope. We need women's health care to be taken seriously. We know that women that are women do women that are doctors are paid less.
我们知道,如果你为女性做手术,与为男性做同等手术相比,报酬更低。而且不仅仅是1%、2%,而是超过20%。我们知道很多人没有家庭医生。所以我很幸运能有一个家庭医生,可以每年为我检测,看宫颈癌是否出现,并检查我是否感染了HPV。
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We know that if you do surgeries on women for the same equivalent of for men, they are paid less. And not just like, you know, 1% 2% like 20 over 20%. We know that so many people don't have a primary healthcare doctor. So I was lucky enough to have a primary healthcare doctor that could test me every year to see if cervical cancer had appeared and check me for HPV.
我们还没有做到这一点。如果你现在想做HPV的家庭检测,你必须付费,这对很多人来说是遥不可及的。我们甚至还没谈到癌症的费用。你知道,癌症患者在治疗期间要花费高达33,000美元。
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We don't have that yet. And if you want to do home care tests now for HPV, you have to pay, which is out of reach for so many people. We haven't even talked about the cost of cancer. You know, cancer patients pay up to $33,000 when they're going through cancer treatment.
自付的钱,用来支付OHIP(Ontario Health Insurance Plan: 安大略省健康保险计划)或我的福利不覆盖的项目,还得一直和我的保险公司斗争。所以,这是一个系统问题。不是一件事,因为很多事情都影响着我们。如果我们不投资于公共医疗系统,不是残羹剩饭,而是能满足每个人需求的真正的公共医疗,我们将继续看到人们患上宫颈癌,而这本是完全可以预防的。
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The amount of money that went out of pocket to pay for things that were not covered by OHIP or my benefits, having to fight with my insurance company all the time. So, it's this system. It's not one thing because it impacts so many things impact us. And if we're not investing in the system in public health care and not the scraps, but actual public health care that meets everybody's needs, we're going to continue to see people have cervical cancer, which is completely preventable.
完全可以预防。我想这就是让我想要掀桌子、扔椅子的事情,这是可以预防的。人们没有在这方面投资,否则我就不会……我会有更多的孩子。我会在我的工作中茁壮成长。
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Completely preventable. I think that's what thing that makes me want to flip a table, throw a chair, is that this is preventable. and people did not invest in this, I wouldn't I would have had more children. I would have been in my job thriving.
但因为公共医疗的投资不足,像我这样的人必须经历这些。所以我希望这能成为历史,宫颈癌。我也希望我们的医疗系统能继续是公共的,而不是支离破碎的。
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But because there was a deinvestment in public health care, people like me have to go through this. And so I would like this to be history, cervical cancer. I would also want our healthcare system to continue to be public and not fragmented.
所以我没有魔杖,我给你的是一个大答案。
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So I don't have a magic wand and I have a big answer for you.
Farrah Khan: 我想,你知道,我们不能……我想也许问题就在这里。我们只看一件事,而它是一个系统性的问题。Farrah,非常感谢你。
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>> I think that's you know we can't uh I think maybe that's the problem. We look at one thing when it's a systemic thing. Far, thank you so much.
Nam Kiwanuka: 谢谢你。
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>> Thank you.
Farrah Khan: 感谢。
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>> Appreciate it.
Nam Kiwanuka: 这是2025年10月21日的《Mistreated》。你可以在Apple Podcast上关注我们的节目,这样每次有新剧集时你都能收到通知。我们很想听听你的反馈。你可以给我写邮件到 mistreatedodcast@tvO.org,或者在我的社交渠道上联系我。我们很想听听你的故事,如果你想在播客上分享你的故事,可以给我们发一个语音备忘录。这是我们在YouTube上收到的关于我们“疼痛与怀孕”那一集的评论:“女性的健康和福祉必须永远是优先事项。女性不应该因为怀孕而遭受疼痛、发烧、疾病。我们需要将孕妇纳入监管良好的科学药物试验中。”非常感谢那条评论。本周的剧集由Matthew Omara和我制作。数字短片由Ariana Longley制作。制作支持来自Jonathan Hallowell和TVO的数字媒体服务团队。Lori Fu是数字执行制片人。John Ferry是节目和内容副总裁。非常感谢您的收听。
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>> This was Mistreated for October 21st, 2025. You can follow our show on Apple Podcast so that you can get notified each time a new episode is available. We would love to hear your feedback. You can write me an email at mistreatedodcast at tvO.org or reach out to me on my social channels. We'd love to hear your stories and you can send us a voice memo if you'd like to share your story on the podcast. Here's a comment we got on YouTube from our pain and pregnancy episode. The health and well-being of the woman must always be a priority. Women should not suffer pain, fever, disease because they are pregnant. We need to include pregnant women in well- reggulated scientific drug trials. Thanks so much for that comment. This week's episode was produced by Matthew Omara and me. Digital shorts by Ariana Longley. Production support from Jonathan Hallowell and TVO's digital media services team. Lori Fu is the executive producer of digital. John Ferry is vice president programming and content. Thanks so much for listening.
📌 文中提及的人物和组织
人物: Nam Kiwanuka
公司/组织: TVO Today, Ontario government