Latest / Amplify: A Podcast Powered by Patient Voice Partners / Breaking the Silence: Harjeet Kaur on Rare Cancer, Cultural Stigma, and Turning Pain into Purpose

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Breaking the Silence: Harjeet Kaur on Rare Cancer, Cultural Stigma, and Turning Pain into Purpose · Amplify: A Podcast Powered by Patient Voice Partners

• 0:01
  SPEAKER_02: Welcome to Amplify, Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations.
• 0:11
  SPEAKER_02: I'm Ursula Mann.
• 0:12
  SPEAKER_00: And I'm Brent Cordy.
• 0:14
  SPEAKER_00: Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
• 0:21
  SPEAKER_02: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.
• 0:32
  SPEAKER_03: I'm so excited for today's show on Amplify, and I'm joined today with my co-host, Anne-Marie Hayes.
• 0:38
  SPEAKER_03: Today we're going to be joined by our guest, Harjeet.
• 0:41
  SPEAKER_03: And Harjeet has experienced an ultra-rare blood cancer.
• 0:45
  SPEAKER_03: So rare that in fact no one in Canada has experienced this.
• 0:49
  SPEAKER_03: She's also become a patient advocate and a community based out of Calgary.
• 0:53
  SPEAKER_03: The cancer I'm talking about is stage four subcutaneous pankydis-like T cell lymphoma.
• 1:00
  SPEAKER_03: For short, it's called SPTCL.
• 1:03
  SPEAKER_03: Now, you will have heard me on other shows usually share a little bit of information about the disease that we're going to be talking about.
• 1:10
  SPEAKER_03: But because it's ultra-rare, this has a whole different type of journey.
• 1:13
  SPEAKER_03: And we're going to let Harjeet talk to us today about what that has meant and what that has looked like.
• 1:19
  SPEAKER_03: We're going to explore her personal diagnosis story, her reflections on cultural perceptions of cancer, and how she has turned her experience into meaningful advocacy.
• 1:28
  SPEAKER_03: Now, before we start, Anne-Marie, I'm interested, what are your thoughts on how culture impacts disease and the entire journey?
• 1:36
  SPEAKER_01: It's a really interesting question.
• 1:38
  SPEAKER_01: And I have to say it was the first time I heard Harjee tell her story.
• 1:42
  SPEAKER_01: We were in a small room at a conference, and it was a fairly intimate room.
• 1:47
  SPEAKER_01: And this idea she brought forward, and I saw others, it was just this magical moment where others in the audience were realizing that they had experienced similar things in their own community.
• 1:58
  SPEAKER_01: And it was just very eye-opening for me to think about that.
• 2:02
  SPEAKER_01: So yeah, it was a really interesting conversation we had following that.
• 2:07
  SPEAKER_03: I really appreciate you sharing that.
• 2:09
  SPEAKER_03: On the personal front, I've come to realize we don't know what we don't know.
• 2:13
  SPEAKER_03: And the South Asian community is one I live in personally.
• 2:17
  SPEAKER_03: And being white and blonde, albeit I might be a little bit lighter blonde than I come naturally.
• 2:22
  SPEAKER_03: But the point is I now notice when things are missing in the room and how important and rather have when people are missing in the room as well, not just things, but both, and how important representation is.
• 2:34
  SPEAKER_03: And I've seen that in my personal family as my kids are growing up.
• 2:38
  SPEAKER_03: And also I recognize when things get brought forward to me on the cultural differences.
• 2:44
  SPEAKER_03: So I've had really interesting experiences over the years with my mother-in-law.
• 2:48
  SPEAKER_03: Sometimes there's disagreements on cultural interpretations or things that are good luck or bad luck.
• 2:53
  SPEAKER_03: But it's been a very interesting thing.
• 2:55
  SPEAKER_03: And I've just really valued and appreciated all the personal conversations I've had with Hardid on this front because we can crack little jokes.
• 3:03
  SPEAKER_03: And I'm a little bit on the inside of the jokes because I know some of the sayings that get said, which is funny.
• 3:08
  SPEAKER_03: Many years ago, when my husband and I got together, I was sometimes the only white person in the room or at the party.
• 3:13
  SPEAKER_03: And things have really changed.
• 3:15
  SPEAKER_03: But it's certainly it's important to understand where people come from and the perspectives that they bring and what's really important to them.
• 3:22
  SPEAKER_03: And so I really appreciate so much the courage to help reduce stigma, change things, and bring representation forward.
• 3:30
  SPEAKER_03: So with that, Harjee, so delighted to have you join Amplify today.
• 3:35
  SPEAKER_03: Thank you for being here.
• 3:36
  SPEAKER_03: I'm gonna ask you to take us back to when you first started feeling symptoms, what happened, what was off, and where you went from there.
• 3:45
  SPEAKER_05: To me, it was back in 2019.
• 3:47
  SPEAKER_05: So I moved to this country along with my husband in 2018, dreaming a good life, having a career, having a family back in 2018.
• 3:56
  SPEAKER_05: But then in 2019, I started having fevers.
• 4:00
  SPEAKER_05: And it just came up with the just normal high fevers ranging from 39 to 40 degrees Celsius, which my family doctor couldn't understand.
• 4:09
  SPEAKER_05: And she was like, it could be viral or a flu.
• 4:12
  SPEAKER_05: But then I ended up having those fevers for weeks or months.
• 4:16
  SPEAKER_05: And every time I end up going to emergency, I was told, you just have high fever, take Tylenol, go home.
• 4:23
  SPEAKER_05: You don't have any other symptoms.
• 4:24
  SPEAKER_05: So there were multiple episodes of emergency at that time.
• 4:28
  SPEAKER_05: And I'm glad that I had my family doctor because not a lot of people have family doctor in Canada.
• 4:35
  SPEAKER_05: They think that they don't need help.
• 4:37
  SPEAKER_05: So my family doctor was very supportive, and she referred me to infectious disease specialist back in Edmonton that time.
• 4:43
  SPEAKER_05: And I saw him and he was like, Marjee, it looks like that it's viral or a flu, it can go on for months.
• 4:49
  SPEAKER_05: And I was already down one month, and it was just not normal fevers.
• 4:54
  SPEAKER_05: I was having chills.
• 4:57
  SPEAKER_05: I started having ulcers and I could not eat much.
• 5:00
  SPEAKER_05: Imagine you're having high fever and you can't do anything.
• 5:03
  SPEAKER_05: And it was very overwhelming for my husband to go to work, come back and take care of me.
• 5:09
  SPEAKER_05: So they were months of high fever episodes.
• 5:11
  SPEAKER_03: And Harjee, were these mouth ulcers when you say you couldn't eat?
• 5:15
  SPEAKER_03: Yeah.
• 5:15
  SPEAKER_03: Yeah.
• 5:16
  SPEAKER_05: Very uncomfortable.
• 5:17
  SPEAKER_05: It started having mouth ulcers, high fevers, chills, episodes of blackout, too.
• 5:24
  SPEAKER_05: And it was very overwhelming for him to take care of me.
• 5:28
  SPEAKER_05: And finally, we had to advocate for getting a CT scan.
• 5:32
  SPEAKER_05: And in back in 2019, it was not easy.
• 5:35
  SPEAKER_05: There was some private places you could get it done, but you also need a requisition to get it done.
• 5:40
  SPEAKER_05: So we had to really advocate hard to get a CT scan because it was already one and a half months, me having high fevers, and I'm not getting any answers for it.
• 5:50
  SPEAKER_05: So the doctors finally approved and they got my CT scan done.
• 5:54
  SPEAKER_05: And after a few days, we got a call saying that we need to admit her at the hospital because we see unusual activity, but we don't know what it is.
• 6:03
  SPEAKER_05: So let her admit to the hospital.
• 6:05
  SPEAKER_05: So I was at University of Albana Hospital for almost two and a half months.
• 6:09
  SPEAKER_05: Wow.
• 6:09
  SPEAKER_05: Before diagnosis.
• 6:11
  SPEAKER_05: And they still could not figure it out what was going on.
• 6:14
  SPEAKER_05: I had endless biopsies, surgeries, MRI, CT, you name it, I had it.
• 6:20
  SPEAKER_05: I had laparoscopy, colonoscopy.
• 6:23
  SPEAKER_05: But the weird thing was they could not understand what was happening to me.
• 6:27
  SPEAKER_05: My body started swelling up.
• 6:29
  SPEAKER_05: I still remember I was in the room in the hospital bed and multiple doctors came in to check me, like they were research students, but there was no answers to why it is happening, what is happening.
• 6:39
  SPEAKER_05: And finally, me and my husband, we just gave up and we were like, we just go back to India because we're not getting any answers.
• 6:46
  SPEAKER_05: It's been two and a half months.
• 6:48
  SPEAKER_05: And they just came in and they said, we just want to do one last biopsy.
• 6:52
  SPEAKER_05: It's a skin punch biopsy, and that's the only last option we have.
• 6:56
  SPEAKER_03: So people were believing you.
• 6:58
  SPEAKER_03: It sounds like they were trying to do testing, but at the same time, you're asking for different tests to say, please help figure this out.
• 7:06
  SPEAKER_05: Yeah, like we had to advocate hard to get the CT scan first initially because they were thinking it's just viral or a flu, which can take months.
• 7:15
  SPEAKER_05: But being young adult, also it's difficult because I was 32, I was young, I was healthy, and never had any medical issues earlier.
• 7:23
  SPEAKER_05: But when they said that they want to do a skin punch biopsy, we agreed to it.
• 7:27
  SPEAKER_05: And 20 28th, 27th of August, during 3 o'clock, the doctors rushed into the room, and we were already getting my papers ready for discharge because we had no answers, and my husband was planning to take me back home.
• 7:42
  SPEAKER_05: And my mom already flew from India one week before to help us.
• 7:46
  SPEAKER_05: And the doctors rushed into the room and they said that we got the diagnosis and we really want you to stay, and we need to start the treatment ASAP.
• 7:55
  SPEAKER_05: And honestly, I was just lying on the bed and I was like, What it is?
• 7:58
  SPEAKER_05: And she said it's subcutaneous caniculitis T cell lymphoma.
• 8:02
  SPEAKER_05: And I could not understand what she was talking about, and I was like, What is it exactly?
• 8:07
  SPEAKER_05: I don't know.
• 8:07
  SPEAKER_05: She's like stage four rare blood cancer, and it's aggressive, and we need to start because it's stage four, you don't have much time left because if it's spread all over your body, it hasn't touched the organs yet, but we really need to start the treatment yes, AP and the words when she said that you have stage four cancer.
• 8:28
  SPEAKER_05: No one wants to hear those words when you're young and being a South Asian, I've never come across someone around me with cancer, and maybe I've never heard things about cancer.
• 8:39
  SPEAKER_05: So the only thing in my mind was cancer happens to elder people, and why need just I'm just 32.
• 8:45
  SPEAKER_05: And my mom was standing next to me and she had tears in her eyes, and I could not react because I felt if I just melt down right now, it will be very difficult for me to make everyone understand.
• 8:57
  SPEAKER_05: And I just called my husband, he was with my family doctor talking to her how we can take her back to India.
• 9:03
  SPEAKER_05: It's a 24-hour flight, she's having high fevers, blackout, chills.
• 9:06
  SPEAKER_05: I called him and I didn't wanted to tell him everything on phone, and I was like, You need to come back.
• 9:11
  SPEAKER_05: They said that we got the diagnosis, and he rushed back and we spoke, and I told him one thing I did not expect that it could be cancer because obviously me being young, and I had this question like, can we just get all the reports, my diagnosis, and I can share it to my family doctor back home in India just to get that second opinion.
• 9:33
  SPEAKER_05: And we just asked him how much time I have.
• 9:36
  SPEAKER_05: We can get some time to just check.
• 9:39
  SPEAKER_05: And it was 3 p.m.
• 9:40
  SPEAKER_05: in Canada and it was 3 a.m.
• 9:42
  SPEAKER_05: in India, so we took four or five hours of notice to just speak to my family doctor back home in India.
• 9:48
  SPEAKER_05: My aunt in London, England, she's a doctor too.
• 9:51
  SPEAKER_05: So we spoke to everyone and everybody said that you are in the right place at the right time.
• 9:56
  SPEAKER_05: It's stage four, it's aggressive.
• 9:58
  SPEAKER_05: We would recommend you not to come back and start the treatment ASAP there.
• 10:03
  SPEAKER_05: So 28th of August was the time when I was diagnosed back in 2019.
• 10:08
  SPEAKER_01: So, Harji, thank you for sharing that with us.
• 10:13
  SPEAKER_01: You've really described that defining moment for you.
• 10:16
  SPEAKER_01: And I have to say, I think that you faced it with grace and courage.
• 10:21
  SPEAKER_01: In that moment, did you get what you needed?
• 10:23
  SPEAKER_01: In that moment, no, what did you need that you weren't able to get?
• 10:27
  SPEAKER_01: What would be helpful?
• 10:28
  SPEAKER_05: Honestly, I at that moment I didn't understood what was happening, what was going on with me.
• 10:34
  SPEAKER_05: I was just, I just went on that sullen zone where I just felt that everything is just taken away.
• 10:41
  SPEAKER_05: My life is just slipped upside down, and I don't know how would you know it go further.
• 10:48
  SPEAKER_05: Every chemo sessions and my fevers were not stopping after chemo as well.
• 10:53
  SPEAKER_05: And I had this complication, which is HLH, which is an autoimmune disease along with cancer.
• 10:59
  SPEAKER_05: So things were just getting worse for me day by day.
• 11:03
  SPEAKER_05: So nothing was getting better, and I was losing hope.
• 11:07
  SPEAKER_05: But the problem was I could not speak to someone around me because there was fear, there was tension, there was stress, there was tears in their eyes, which I could not see, and they could not do it in front of me because they used to feel that how would I feel?
• 11:24
  SPEAKER_05: And same thing with me.
• 11:25
  SPEAKER_05: Like it was a vice versa of a condition for me as well.
• 11:28
  SPEAKER_05: I used to cry when I was alone in the room or the washroom, and it was not an easy situation for all of us.
• 11:35
  SPEAKER_05: We were impacted by the word cancer, and we were going through this all together.
• 11:40
  SPEAKER_05: My dad flew from India, ASAPS, he got to know about this.
• 11:44
  SPEAKER_05: My brother was here.
• 11:45
  SPEAKER_05: So I had a huge support system.
• 11:47
  SPEAKER_05: My mom, my dad, my brother, my husband, even my close friends who, you know, came from different parts of the city and even from different country to just visit me because then they got to know that I was diagnosed with cancer.
• 12:00
  SPEAKER_05: But something in my mind, when you have that feeling that it's something is not right, it might not get better, it might get worse.
• 12:08
  SPEAKER_05: So that feeling was always there.
• 12:10
  SPEAKER_05: But I could not express myself to anyone.
• 12:13
  SPEAKER_01: Was that more because you were trying to be careful of their emotions as well?
• 12:18
  SPEAKER_01: Would having more emotional support, psychological support from somebody outside of your family have helped more?
• 12:25
  SPEAKER_05: No, at that moment, it's just us.
• 12:27
  SPEAKER_05: It was just my family and friends.
• 12:29
  SPEAKER_05: I didn't reach out to anyone because I was not in that condition.
• 12:32
  SPEAKER_05: I had no idea.
• 12:33
  SPEAKER_05: And no one actually told me about it as well.
• 12:35
  SPEAKER_05: That was a strange thing that when I was sitting in the hospital getting my chemo done, I remember it was just me in the room who was young, and I could see elderly people sitting next to me.
• 12:46
  SPEAKER_05: And I had this question with a nurse that why it's just me in the room?
• 12:50
  SPEAKER_05: Why I don't see other people around?
• 12:53
  SPEAKER_05: And at that time she mentioned there are young adults who go through cancer, and I know it's tough.
• 12:59
  SPEAKER_05: And there is a support group out there called Young Adult Cancer Canada.
• 13:03
  SPEAKER_05: That was the first time I got connected to YAC in 2019, around November or December.
• 13:10
  SPEAKER_05: After a few months, my condition was just getting worse every day by day because of my chemo was not working.
• 13:16
  SPEAKER_05: The HLH condition was making it worse.
• 13:18
  SPEAKER_05: So basically, just in a small, simple name and language, what my oncologist explained me was there were two armies fighting inside my body.
• 13:27
  SPEAKER_05: One was cancer and one was HLH.
• 13:29
  SPEAKER_05: As they were giving me chemo and killing my cancer cells, the HLH condition was making it worse.
• 13:35
  SPEAKER_05: So HLH was basically eating my good cells.
• 13:39
  SPEAKER_05: So my body was fighting against my own immune system.
• 13:43
  SPEAKER_05: So after three chemo, they just told me that I remember I went to see my oncologist because they did a PET scan and they said that Harjit, what's your appetite?
• 13:53
  SPEAKER_05: And I was like, What do you mean?
• 13:55
  SPEAKER_05: What do you want to do?
• 13:57
  SPEAKER_05: And I just told him, I want to live.
• 13:59
  SPEAKER_05: I'm done, I'm tired, I'm exhausted.
• 14:03
  SPEAKER_05: I just want my life back.
• 14:04
  SPEAKER_05: I'm just 32, I want to live.
• 14:06
  SPEAKER_05: And he's like, I'm sorry, your condition is your cancer is so aware and aggressive, and we are trying our best to treat you.
• 14:13
  SPEAKER_05: But the issue is that because you have this other condition, it's making it worse.
• 14:18
  SPEAKER_05: And there are only 150 cases reported globally with this type of cancer.
• 14:23
  SPEAKER_05: So we are trying our best to treat you.
• 14:25
  SPEAKER_05: So right now we only have two options for you.
• 14:28
  SPEAKER_05: One, we can keep on doing chemotherapy and see how your body takes it.
• 14:34
  SPEAKER_05: Second, we can do a stem cell transplant or bone marrow transplant where you can get a new immune system.
• 14:40
  SPEAKER_05: And this could give you a little life longer.
• 14:43
  SPEAKER_05: Maybe one, two, three, we don't know.
• 14:45
  SPEAKER_05: But this is the only option we can try.
• 14:47
  SPEAKER_05: And at that moment when he was talking, the only thing which was running in my mind was, what if everybody's trying their best?
• 14:56
  SPEAKER_05: But this is the only option.
• 14:57
  SPEAKER_05: I might not survive, I might die, I might not be able to do this anymore.
• 15:03
  SPEAKER_05: And I just went home and I just locked my door and I was just crying.
• 15:08
  SPEAKER_05: I just felt that everything is over.
• 15:11
  SPEAKER_05: I'm 32, my life is just finished.
• 15:13
  SPEAKER_05: We're just all trying to save me, but nothing will work out.
• 15:17
  SPEAKER_05: And by that time, my family, my husband, my family outside were discussing about that.
• 15:22
  SPEAKER_05: They spoke to my aunt and uncle back home in India, and everybody decided already that I'm going for a stem cell transplant.
• 15:29
  SPEAKER_05: So when I came out of the room, the decision was already made that we are doing a stem cell transplant.
• 15:34
  SPEAKER_05: And luckily, my brother was my donor and he was a hundred person match, which is really rare to find.
• 15:42
  SPEAKER_05: And now, if I go back to that time and I feel like, did anybody ask my brother that he wanted to be the donor or not?
• 15:50
  SPEAKER_05: This is the thing in the South Asian community.
• 15:53
  SPEAKER_03: And did anybody ask you, Harji?
• 15:55
  SPEAKER_03: You mentioned that you came out and the decision was made.
• 15:58
  SPEAKER_03: What did you think about that?
• 16:00
  SPEAKER_05: No, I see honestly, at that moment I just gave up.
• 16:03
  SPEAKER_05: I was just losing hope, right?
• 16:06
  SPEAKER_05: So when I came out of the room, the decision was made, and I, my uncle back home, who's a doctor, my aunt, and they all spoke to my family and they were like, no, this is the best thing we can do because her cancer is rare and the doctors know the best, so they are trying their best to treat her.
• 16:22
  SPEAKER_05: So at that moment, I thought, okay, maybe we're just trying our best.
• 16:25
  SPEAKER_05: Let's just give it a try.
• 16:27
  SPEAKER_05: But when I think back now, I feel like, did my brother asked about it or not?
• 16:31
  SPEAKER_05: But then being a South Asian, I guess that's one thing which is very, very good in our communities.
• 16:37
  SPEAKER_05: We are very supportive when it comes to something like that, giving.
• 16:41
  SPEAKER_05: We are very giving in that way.
• 16:42
  SPEAKER_05: But yeah, there are certain things which we don't talk about too.
• 16:47
  SPEAKER_05: But because if my brother, honestly, I'm here today, I had my stem cell transplant at the worst time during COVID in April 2022 when I was isolated for 35 days without no one around me, not a single one holding my hand or sitting next to me.
• 17:02
  SPEAKER_05: It was not an easy journey.
• 17:04
  SPEAKER_05: I still don't know how I made it so far without them.
• 17:07
  SPEAKER_05: But I'm glad, I'm grateful that I'm here today.
• 17:10
  SPEAKER_05: And 14th of April 2020 is the day when I had my stem cell transplant.
• 17:14
  SPEAKER_05: And I still celebrate that day because I remember nurses wished me happy rebirthday.
• 17:19
  SPEAKER_05: And I know how people struggle a lot today as well to find a stem cell donor because not a lot of people are aware how a stem cell donor can save someone's life because we have so much less education and awareness about it.
• 17:33
  SPEAKER_05: So I think, yeah, I'm glad that my brother was here and he could be my savior back then.
• 17:39
  SPEAKER_01: If your brother listens to this podcast, is there something you'd like to say to him?
• 17:46
  SPEAKER_05: I love him.
• 17:46
  SPEAKER_05: I'm grateful that he was here during my journey.
• 17:49
  SPEAKER_05: He's younger to me.
• 17:50
  SPEAKER_05: We fight, we do a lot of stuff.
• 17:52
  SPEAKER_05: But you know, today in this medical world, I am his DNA.
• 17:56
  SPEAKER_05: I it's silly and it's funny to know that I'm his DNA.
• 18:01
  SPEAKER_05: So yeah, I'm grateful that he was there when I needed him the most.
• 18:05
  SPEAKER_05: That's beautiful.
• 18:06
  SPEAKER_03: That's beautiful.
• 18:07
  SPEAKER_03: And you mentioned that in the South Asian community, people are very giving and want to be kind to each other.
• 18:13
  SPEAKER_03: And I'd like to talk to you a little bit more about that.
• 18:16
  SPEAKER_03: So you had the stem cell transplant, pandemic is on, so you're on your own.
• 18:21
  SPEAKER_03: But even later on, when you weren't on your own, I know you had shared with me that cancer is a taboo topic, so to speak, in the South Asian and Sikh circles.
• 18:31
  SPEAKER_03: And people didn't want to use the word cancer.
• 18:35
  SPEAKER_03: They would tell you you had a problem.
• 18:37
  SPEAKER_03: Tell me what that meant to you and what impact that had on you.
• 18:41
  SPEAKER_05: So when I was diagnosed, obviously I was surrounded by my family.
• 18:44
  SPEAKER_05: The support was there.
• 18:46
  SPEAKER_05: They used to go with me to chemo, make me food, give me medication.
• 18:49
  SPEAKER_05: Everything was there.
• 18:50
  SPEAKER_05: They were very supportive in that way.
• 18:52
  SPEAKER_05: But the strange part was they never talked about the pain, the experience, the word cancer.
• 18:58
  SPEAKER_05: And that I realized when I was going through my stem cell transplant.
• 19:02
  SPEAKER_05: And honestly, at that time, I was feeling what if I don't come back from here?
• 19:08
  SPEAKER_05: What if I am not coming out of this room and I might not survive?
• 19:12
  SPEAKER_05: And I just want to express my feelings to my family that how grateful I was for them.
• 19:18
  SPEAKER_05: But one thing which was missing was a talk about cancer.
• 19:22
  SPEAKER_05: We never talked, we never spoke.
• 19:25
  SPEAKER_05: And when I came out of Stemplin, honestly, I was struggling a lot mentally, physically, because I was isolated for 35 days.
• 19:32
  SPEAKER_05: I was in so much of pain during that time.
• 19:35
  SPEAKER_05: And when I came out of it, I started writing about it and I connected to YAC.
• 19:39
  SPEAKER_05: That was my first time I connected to YAC because I was looking for support out there.
• 19:44
  SPEAKER_05: I connected to Canadian Cancer Society, there is connection.ca.
• 19:48
  SPEAKER_05: So I connected to a lot of organizations because we were during COVID, we were at home, there was nothing to do, and I was already bedridden.
• 19:56
  SPEAKER_05: I could not go out, I could not do much stuff.
• 20:00
  SPEAKER_05: So I started connecting to these organizations, and what I found was that I was the only person in the room who was a brown woman diagnosed with cancer.
• 20:10
  SPEAKER_05: That made me think a lot that why it's just me in the room.
• 20:14
  SPEAKER_05: You know, why I can't see anyone out from the brown community.
• 20:18
  SPEAKER_05: At that time, I figured it out, I researched, I got to know a lot of things that cancer is a huge stigma and taboo in our culture.
• 20:27
  SPEAKER_05: Not even in the brown community, it's also in African community, in many different communities.
• 20:32
  SPEAKER_05: But South Asian communities, we don't talk about cancer.
• 20:35
  SPEAKER_05: Me being 32, I never heard someone saying the word cancer around me.
• 20:40
  SPEAKER_05: That's also a rare, I'm sure there were multiple people who were diagnosed with cancer when I was young, but we never got to hear about it.
• 20:48
  SPEAKER_05: So this came to my mind that why is it?
• 20:51
  SPEAKER_05: And then I just had my research time, I just researched all across and I started sharing my story online.
• 20:59
  SPEAKER_05: That was the first time I started talking about my journey on social media because I was looking for someone out there with my own color, with my own age, who could guide me or support me because I was suffering in silence at that time.
• 21:12
  SPEAKER_05: I could not, my family was still there.
• 21:15
  SPEAKER_05: They were supporting me.
• 21:16
  SPEAKER_05: My mom actually took care of me like a newborn.
• 21:19
  SPEAKER_05: She used to give me shower, take care of me.
• 21:22
  SPEAKER_05: But there was fear still in their eyes.
• 21:25
  SPEAKER_05: They were still scared to talk, they were still not sure.
• 21:29
  SPEAKER_05: And but I was looking for help at that time.
• 21:32
  SPEAKER_03: Harjeed, it's almost if you don't talk about it, it's not there.
• 21:36
  SPEAKER_03: Let's not discuss it openly.
• 21:38
  SPEAKER_03: But you needed the opposite.
• 21:39
  SPEAKER_03: You needed and wanted to talk about it.
• 21:41
  SPEAKER_03: And I understand that within the community, you faced people with pointing a little bit of blame.
• 21:48
  SPEAKER_03: You had people say to you, What did you do to get this?
• 21:51
  SPEAKER_03: as though it was your fault.
• 21:53
  SPEAKER_03: Tell us a little bit about that.
• 21:54
  SPEAKER_05: Yeah.
• 21:54
  SPEAKER_05: So when I started sharing this on social media, I got a lot of DMs hate.
• 22:00
  SPEAKER_05: And good messages too, where people thought that it's related to karma.
• 22:04
  SPEAKER_05: So that's you had bad karma, but and sometimes it was like you're just doing it to get the attention out there.
• 22:11
  SPEAKER_05: So those were the things, and then I received some good DMs from people who were going through it too.
• 22:18
  SPEAKER_05: And they were like, We are asked not to talk about it, we are asked not to say the C-word, we can't even talk to our family about it.
• 22:26
  SPEAKER_05: So girls were getting that hope through my journey, and that's how it all started.
• 22:31
  SPEAKER_05: Honestly, I started talking about it more.
• 22:34
  SPEAKER_05: My mom was not even happy when I shared my bald head picture on social media, and she was like, It will bring a bad luck, you know, where we say able I and stuff.
• 22:43
  SPEAKER_05: So it's like it was for her, it was like people will see that and they will bring a bad luck.
• 22:48
  SPEAKER_05: You just got better, you just had treatment, you should not think about it, you should move on, and stuff like that.
• 22:55
  SPEAKER_05: But I really wanted her to understand this has impacted my life and your life too.
• 23:01
  SPEAKER_05: Cancer doesn't affect you, it affects the whole family.
• 23:04
  SPEAKER_05: But it was very difficult for them to understand.
• 23:07
  SPEAKER_05: But now, after five years, I'm glad that they understand that why it matters, why me speaking matters to them as well.
• 23:16
  SPEAKER_05: And I never stopped, I kept on going, and I talked about it on my social media, on podcasts, I collaborated with organizations.
• 23:25
  SPEAKER_05: And back in 2022, I went for this conference at the Healthy Mamma Conference in Toronto, and that's how I met Annie.
• 23:33
  SPEAKER_05: So I was about to speak my experience and how cancer is a taboo in a South Asian community.
• 23:40
  SPEAKER_05: So I was talking about it in the room, and I just wanted to talk about it that you know, how our voices matter.
• 23:46
  SPEAKER_05: Being there are brown color women, our voices do matter.
• 23:50
  SPEAKER_05: And I was looking for hope, and people should understand what it looks like when you're an immigrant coming to a new country, diagnosed with cancer, navigating the whole healthcare system, and then facing the challenges within the community, right?
• 24:04
  SPEAKER_05: Because you don't have anyone to talk to.
• 24:06
  SPEAKER_05: And that's how the idea of having my own safe space called Shy Co., which is a salvation cancer community, started.
• 24:14
  SPEAKER_05: I'm a co-founder.
• 24:15
  SPEAKER_05: There's another friend of mine who's a cancer patient, she's also part of it.
• 24:18
  SPEAKER_05: It's just started with a conversation, and honestly, it's still a baby because we are finding a lot of difficulties where people are not still okay to talk about it in that group.
• 24:28
  SPEAKER_05: But I'm not stopping.
• 24:30
  SPEAKER_05: I do a lot of work through my social media, and a lot of people in Calvary know that I am an advocate and I talk about cancer in my community, and that's what I want to be, and I want to do.
• 24:41
  SPEAKER_03: I want to be there for those people who can't be the voice for themselves.
• 24:46
  SPEAKER_03: And Harji, what do you wish more people within your community understood about cancer?
• 24:50
  SPEAKER_03: What take-home message would you like about the fear and stigma?
• 24:54
  SPEAKER_03: What would you like them to think about and what would you like to see changed?
• 24:57
  SPEAKER_05: For me, I feel like being a South Asian, any health illness is a taboo.
• 25:03
  SPEAKER_05: Cancer is a huge one, but if you see anxiety, depression, diabetes, there are a lot of other illnesses we don't talk about.
• 25:11
  SPEAKER_05: But when it comes to cancer, there's utter silence in the room.
• 25:15
  SPEAKER_05: Either the extended family just step back because they don't understand how to do it or you know what to talk.
• 25:22
  SPEAKER_05: So my message to my community is speak and understand what cancer is about.
• 25:28
  SPEAKER_05: Take it as a normal conversation.
• 25:30
  SPEAKER_05: It's an help, it's a medical issue we need to address.
• 25:34
  SPEAKER_05: And in our community, we even don't go for PAP test.
• 25:36
  SPEAKER_05: We even don't go for mammogram.
• 25:38
  SPEAKER_05: You don't have a family doctor.
• 25:40
  SPEAKER_05: So these are the things which we really need to educate and awareness about.
• 25:44
  SPEAKER_05: So that's my message that understand and just start a conversation.
• 25:49
  SPEAKER_05: If someone is going through cancer, help them.
• 25:52
  SPEAKER_05: Be them, be there for them.
• 25:54
  SPEAKER_05: Because a lot of time people don't understand if someone is going through cancer, what to ask, what to say.
• 25:59
  SPEAKER_05: There are a few small things you can just do for them, just being present for them, just be there for them.
• 26:05
  SPEAKER_05: You don't have to ask questions about the treatment, about the plan.
• 26:09
  SPEAKER_05: You can just be there for them, have a cup of tea, just provide those things to them because you can give them food, take them to for the treatment.
• 26:17
  SPEAKER_05: They need your support.
• 26:19
  SPEAKER_05: People need their people at that time, and that's missing because we don't talk about it.
• 26:25
  SPEAKER_03: Thank you for sharing.
• 26:26
  SPEAKER_03: And we're going to put some information in the show notes so people can link out to your organization.
• 26:31
  SPEAKER_03: And appreciate you sharing everything on reflections in the South Asian community.
• 26:36
  SPEAKER_03: If we don't have the courage to start to talk about it, nothing's going to change.
• 26:39
  SPEAKER_03: So thank you for helping shed a light and giving people the permission to say it's okay by being so courageous to start to share your story.
• 26:48
  SPEAKER_03: And you've turned this pain into purpose.
• 26:50
  SPEAKER_03: You mentioned speaking publicly around a number of different areas.
• 26:54
  SPEAKER_03: Regarding advocacy, what does that word mean to you?
• 26:58
  SPEAKER_05: To me, advocacy just came before cancer.
• 27:01
  SPEAKER_05: When I was told that it's nothing, it's just fever.
• 27:05
  SPEAKER_05: And I still could feel that something is not right.
• 27:08
  SPEAKER_05: I need to advocate for my own health.
• 27:10
  SPEAKER_05: And that's what it came from before cancer and after cancer.
• 27:13
  SPEAKER_05: It just slipped into me.
• 27:15
  SPEAKER_05: And I was like, I need to do something about it.
• 27:17
  SPEAKER_05: I need to help my people.
• 27:18
  SPEAKER_05: I need to make sure that my voice is heard outside of the room and within the organization, not only as a patient, but also as an immigrant, as a woman, as a brown woman, right?
• 27:29
  SPEAKER_05: So that's what it means to me at that time.
• 27:31
  SPEAKER_05: And now I feel like I'm totally into it and I love what I'm doing.
• 27:36
  SPEAKER_05: I'm able to support people.
• 27:37
  SPEAKER_05: I'm able to support organization with my own journey, with my lived experience, because sometimes your own lived experience can create a difference in a healthcare system, right?
• 27:47
  SPEAKER_01: I wanted to ask you, Harji, what was your biggest learning as you moved from being a survivor into being an advocate?
• 27:56
  SPEAKER_05: My biggest learning as a survivor and advocate was obviously to come out of my own safe space and to talk.
• 28:04
  SPEAKER_05: Because initially, when I was diagnosed, I was totally suffering in silence.
• 28:10
  SPEAKER_05: And because I had no idea if what my life would look ahead after a few years.
• 28:16
  SPEAKER_05: But now it's been five years, I'm five years cancer-free, and I've seen myself growing through this journey as a survivor, as a patient, as an advocate.
• 28:25
  SPEAKER_05: So I have learned a lot.
• 28:27
  SPEAKER_05: It's not been an easy journey for me, but I think I've grown through this journey.
• 28:32
  SPEAKER_01: Thank you for that.
• 28:34
  SPEAKER_01: And my last question on your advocacy is what are some of the changes that you're specifically advocating for?
• 28:42
  SPEAKER_01: If folks are listening in who have the ability to make some of these changes, what is it you're asking of them, of the system?
• 28:50
  SPEAKER_05: To me, there are a couple of things.
• 28:52
  SPEAKER_05: One, being an immigrant, coming to a new country and navigating the healthcare challenges was one of the biggest aspects because when you come to this country as an immigrant, language is a huge barrier.
• 29:03
  SPEAKER_05: Me, I'm okay to understand English or speak English, but there are a lot of people who don't, their mother language is still different.
• 29:10
  SPEAKER_05: Having that language barrier in the healthcare system is important.
• 29:14
  SPEAKER_05: Having someone uh understanding their language or just being the translator or peer navigator for them is important to me.
• 29:23
  SPEAKER_05: Second is obviously having a stigma and taboo in the South Asian community.
• 29:27
  SPEAKER_05: Not a lot of people understand what we go through as a South Asian when we are diagnosed with cancer because there's always a silence and isolation.
• 29:35
  SPEAKER_05: To understand that every room should have a voice of different organizations or communities so that they could understand.
• 29:42
  SPEAKER_05: For me, my goal has been very straightforward that I want to be sitting on each table to make them understand what lived patient experience means and what voices of a different community mean to them.
• 29:57
  SPEAKER_05: Because when I go out to the organization or I at the events, I don't see my people there.
• 30:02
  SPEAKER_05: And it's something which I really want to make them understand.
• 30:06
  SPEAKER_05: We need representation, we need equity, diversity, and inclusion.
• 30:11
  SPEAKER_05: Absolutely.
• 30:12
  SPEAKER_01: For listeners who want to get involved or help reduce stigma, what advice do you have for them?
• 30:18
  SPEAKER_05: To get involved, there are a lot of organizations where you can get involved as patient advocates.
• 30:23
  SPEAKER_05: I know something which I don't like is it's that patient advocates are often taken as a volunteer services.
• 30:31
  SPEAKER_05: And when it comes to their life, their lived experience, they're not even paid for it.
• 30:37
  SPEAKER_05: So that's the one thing which I feel patients are not interested because they are talking about their life, they're talking about their lived experience, which needs to be taken care of.
• 30:48
  SPEAKER_05: They're talking and they are taking that story back to that journey.
• 30:52
  SPEAKER_05: They're talking about that journey again and again.
• 30:54
  SPEAKER_05: So one thing which I feel is really important to be considered, and there are a lot of organizations where you can get involved.
• 31:01
  SPEAKER_05: If you are a blood cancer patient, if there is LLSC organization, there are Canadian Cancer Society, there's patient voice partners like you guys, there are these healthy MarioCom trends happening.
• 31:11
  SPEAKER_05: So there are a lot of places where you can get involved, but I know it's tough as a patient to find these resources on one website or in one page, which I also wish we had a resource where we can just go and have a look and just register themselves.
• 31:26
  SPEAKER_01: How people could get involved and if they want to reduce stigma in their own communities.
• 31:32
  SPEAKER_05: Yeah, so when I started talking about being a South Asian, there was a stigma in a taboo, I came across an African Cancer Society too.
• 31:39
  SPEAKER_05: And I know a dear friend who did this sport organization where they help Africans going through cancer.
• 31:45
  SPEAKER_05: So there are organizations who would understand you, even organizations like Yakt as well.
• 31:51
  SPEAKER_05: When I started talking about it, they understood how this means having a silence and stigma in their community.
• 31:57
  SPEAKER_05: And that's a safe space.
• 31:58
  SPEAKER_05: I still feel very safe in that space when I talk to young adults going through cancer because I think it's our age, and sometimes when you're at a young age, you understand that what people are going through.
• 32:09
  SPEAKER_05: If they're elderly people, they might not understand.
• 32:12
  SPEAKER_05: Like in our community, people still don't understand if they're elderly why she's talking about it.
• 32:17
  SPEAKER_05: She should just move on, she should not talk about it because sometimes if you talk, you might get it back.
• 32:23
  SPEAKER_05: So those are the things which I think it's difficult for them to understand.
• 32:28
  SPEAKER_05: But I think we just need to keep on doing what we do.
• 32:32
  SPEAKER_05: You never know, your story out there can help one person out.
• 32:35
  SPEAKER_05: And that's my thing that if one person out there is getting hope and resilience from my journey, then I'm there, then Harji.
• 32:44
  SPEAKER_01: When I heard you speak about your story, I seem to recall part of that story was some of the side effects and long-term issues that you experienced following that.
• 32:54
  SPEAKER_01: For example, fertility issues.
• 32:56
  SPEAKER_01: Would you like to share a little bit about that?
• 32:58
  SPEAKER_05: Thank you for asking that question because not a lot of people know that when you're going through cancer at young age, a lot of people go through perimenopause.
• 33:07
  SPEAKER_05: And I was thrown into that fertility loss because I was so sick, no one actually talked to me about preserving my eggs or my fertility.
• 33:16
  SPEAKER_05: But when I was going through treatment, I just figured it out of checking with my oncologist, and he was like, They were so sick that we didn't had time to discuss.
• 33:25
  SPEAKER_05: And that moment they referred me to fertility specialist in November 2019, I think around that time.
• 33:32
  SPEAKER_05: And I went to see her and she was like, You're already going through aggressive chemo treatment.
• 33:38
  SPEAKER_05: Your ovaries have stopped working, and now you're going for a stem cell transplant, which is more aggressive and painful treatment.
• 33:45
  SPEAKER_05: I'm sorry, you might have to go through perimenopause at the age of 32.
• 33:50
  SPEAKER_05: And at that moment, honestly, I didn't realize how would it impact my life.
• 33:54
  SPEAKER_05: But after cancer, after stem cell, I actually felt the difference and I could feel that how my body has changed.
• 34:02
  SPEAKER_05: And I'm currently on systematic hormonetherapy treatment because of that.
• 34:06
  SPEAKER_05: And I never understood when my mom went through it and what was the feeling like, and now I feel like it's so tough because we are not even educated enough about it, and we don't talk about it when you're going through cancer.
• 34:19
  SPEAKER_05: So that was one thing which I have and I grieve about it all day, every day, sometimes.
• 34:24
  SPEAKER_05: And being a South Asian, it's tough because I remember when I went after five years to India after my chemo, after transplant and stuff.
• 34:33
  SPEAKER_05: People actually said, Oh, you know what you can do is you can adopt a kid or you can do that.
• 34:38
  SPEAKER_05: Just giving their advices, which is sometimes you don't feel like you know what I've gone through, and sometimes being around with people who have kids and they always talk about kids that that kill that beefs come back all the time.
• 34:51
  SPEAKER_05: And it's it's not easy to experience that.
• 34:55
  SPEAKER_05: And that's something which I still, you know, regret.
• 34:58
  SPEAKER_05: I wish someone has talked about it.
• 35:00
  SPEAKER_05: I wish someone could have told me about it.
• 35:03
  SPEAKER_05: Yeah.
• 35:03
  SPEAKER_01: Yeah.
• 35:04
  SPEAKER_01: Thank you for sharing that with us.
• 35:06
  SPEAKER_01: Harsheet, I think everybody listening to you today hears and sees a bright future ahead of you.
• 35:13
  SPEAKER_01: I just wanted to close with a question about the future.
• 35:15
  SPEAKER_01: What are you most looking forward to?
• 35:17
  SPEAKER_01: What's up for you this year?
• 35:19
  SPEAKER_05: A lot of things happened last year.
• 35:21
  SPEAKER_05: I had this five years mark of cancer free.
• 35:24
  SPEAKER_05: So I'm hoping this year my health looks great and healthy.
• 35:28
  SPEAKER_05: My husband and his friends started a new venture last year.
• 35:31
  SPEAKER_05: We opened a pub in Calgary.
• 35:33
  SPEAKER_05: It's called Bizarre Gastro Pub.
• 35:34
  SPEAKER_05: So I was supporting him last year.
• 35:36
  SPEAKER_05: So this year it will be one year to the pub, and I'm helping them just creating that social media and stuff like that.
• 35:43
  SPEAKER_05: I love that.
• 35:44
  SPEAKER_05: So I'm helping them creating that marketing and sales and stuff like that.
• 35:48
  SPEAKER_05: So I'm excited for him because this was his dream back in 2019.
• 35:52
  SPEAKER_05: And but cancer came in, COVID came in, it just changed our life completely.
• 35:57
  SPEAKER_05: So it's his baby, and I'm happy to support him.
• 36:01
  SPEAKER_05: The most exciting is coming up.
• 36:02
  SPEAKER_05: I'm traveling to Mexico next month, so I'm excited for that.
• 36:05
  SPEAKER_05: I always wanted to go to Mexico, but I know initially when I wanted to go, doctors were not sure that I should go travel to Mexico because of my immunocompromised condition, but now I'm excited for that.
• 36:17
  SPEAKER_05: I'm also this year looking forward to collaborate and work with more organizations as a patient partner and patient advocate, hoping that I could get those opportunities to speak.
• 36:29
  SPEAKER_05: I'm also working on my book, A Memoir, and I want to finish that this year.
• 36:34
  SPEAKER_01: That's so exciting.
• 36:35
  SPEAKER_01: Wishing you all the best, Harjit, so much for spending time with us today.
• 36:40
  SPEAKER_03: Thank you for sharing everything, Harjeet.
• 36:42
  SPEAKER_03: That's a lot of exciting things that are going on this year.
• 36:45
  SPEAKER_03: And I want to say Shakriya, thank you.
• 36:47
  SPEAKER_03: Thank you.
• 36:48
  SPEAKER_03: Thank you for listening.
• 36:54
  SPEAKER_03: Thanks for tuning in to Amplify, a podcast powered by Patient Voice Partners.
• 36:59
  SPEAKER_03: If today's story moved you, share it, leave a review, and help us amplify more voices.
• 37:06
  SPEAKER_00: If you're a patient or caregiver, you can join Patient Voice Connect to share your experience and help shape research and care.
• 37:12
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• 37:17
  SPEAKER_04: If you're a clinician, advocate, innovator, or assistive leader, and you'd like to be a guest on the show or share a story, reach out directly through the contact form on that same page.
• 37:28
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• 37:31
  SPEAKER_00: Follow us on LinkedIn at Patient VoicePartners for updates, behind the scenes content, and to meet our upcoming guests.
• 37:37
  SPEAKER_04: Until next time, stay connected.
• 37:40
  SPEAKER_04: Your voice matters.