Returning to Work After Cancer
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TRANSCRIPTION
Audio time: 25:00
Catherine Duranceau: [00:00:04] Hi. Welcome to the Beneva podcast Ask the Experts. I'm your host, Catherine Duranceau. Today, we're diving into an important, yet sensitive topic: returning to work after a cancer diagnosis. Too often, both employers and employees are unaware of the resources available for a smooth transition back to work. So together, we'll look at how workplaces can make this transition easier and really make a difference along the way.
[00:00:28 On screen] Our guests
[00:00:30 On screen] Alvina Nadeem
Engineer, coach, change management advisor and ovarian cancer survivor
Alvina Nadeem: [00:00:32] Hi, I'm Alvina Nadeem. I am a mechanical engineer, a mom of two young boys, and I'm very passionate about human-centred design in healthcare.
[00:00:44 On screen] Sarah Beaudry
Workplace Health Senior Advisor at Beneva
Sarah Beaudry: [00:00:42] Hi, my name is Sarah Beaudry. I'm a workplace health advisor at Beneva, and my main goal at work is to build organizations that are caring, human, and inclusive.
[00:00:53 On screen] Roundtable
Catherine Duranceau: [00:00:56] Alvina, so glad to have you with us. You've overcome ovarian cancer with such courage. Can you share with us your story and how you went through such a difficult time?
Alvina Nadeem: [00:01:06] Yeah. Thank you so much for having me, first of all. I think just the act of having this conversation speaks a lot to me.
So in terms of my story, I was 36 years old. I, at the time, had two little boys who just had turned three and five, I think, if I remember correctly. It was a complete shock because I have no family history, I have no genetic predispositions or anything. I was not expecting to be someone who would be calling themselves a cancer survivor at 36. So yeah, it was a shock.
Catherine Duranceau: [00:01:38] How did you go through the treatments once you got that horrible news? How did that happen?
Alvina Nadeem: [00:01:43] I love talking about my story because I've come to realize that it is one of the good stories. Why I share it is not to be like, “Oh, look, I was so lucky.” No, it's to say, “Here's a blueprint. Can we recreate it? Can we do it again for others?”
In my case, I had a very proactive doctor who immediately took action. I was sent for ultrasounds, I was sent for imagery, and things went really fast. I also landed on a great, great oncologist who was just so good at partnering with me as a patient to develop a plan for me and make decisions and just make me feel that I can participate in this health experience.
Catherine Duranceau: [00:02:25] Which is more human as an approach.
Alvina Nadeem: [00:02:27] Yes, absolutely.
Catherine Duranceau: [00:02:28] How did you feel those symptoms? Because I think that was hard for you to know, “Is it cancerous? Do I have symptoms?” How did that go through?
Alvina Nadeem: [00:02:37] So this is where it's really important to talk about ovarian cancer. Ovarian cancer is really hard to diagnose. It's often called a silent killer. You don't want to Google ovarian cancer if you think you have it because it's scary. For me, I knew that something felt off. I would say early February is when I started to feel like there's something I need to go get checked, because things were just piling up. For example, I felt myself feeling really tired all the time. But again, I had two little kids. So I was like, you know, mom…
Catherine Duranceau: [00:03:07] You’re just always tired.
Alvina Nadeem: [00:03:08] Working mom, two boys keeping me busy. So I was like, you know…
Catherine Duranceau: [00:03:13] You’re a mom. Just take some naps.
Alvina Nadeem: [00:03:15] Yeah, yeah.
Catherine Duranceau: [00:03:16] No. It's not just the nap.
Alvina Nadeem: [00:03:17] Exactly. But then it started to kind of add up where I started to feel that I was getting headaches more often, migraines, things like that. I then started to notice that I was getting cramps before my period would start, and that was not normal for me. I was not someone who had cramps. Well, not…
Catherine Duranceau: [00:03:39] Your whole life.
Alvina Nadeem: [00:03:40] …since I was a teenager, you know what I mean? Like, the last time I had cramps, I was, like, 16 or something. So it was just little, small red flags were going up. I started to wonder, “What is this?” I work as a change management advisor, and the work I was doing was around digital transformation. So we're used to technology and I'm a technophile. I love technology, and as an engineer and all that. So I was playing with ChatGPT. It had come out, so I happened to use that for myself as kind of like a journal. I started to track what was happening.
Catherine Duranceau: [00:04:13] Your symptoms, being like, “What is this doing to my body? What is the answer?”
Alvina Nadeem: [00:04:18] Yes. It helped me, but I'm not saying that everyone should do this, but it helped me go get checked. It said, there's something you should – it was serious. This is not just a cramp.
Catherine Duranceau: [00:04:30] This is a red flag. Please take care of yourself.
Alvina Nadeem: [00:04:32] Yeah. Sometimes you can get certain symptoms and you think, “Oh, well, they'll go away,” but nothing was going away. It was just kind of stacking up. So that's when I was like, “No, no, I’ve got to go get checked.”
Catherine Duranceau: [00:04:42] And afterwards, you underwent surgery to remove those large masses and your ovaries too, and that brought you into menopause. Something rough to go through at the same time. How did you manage that? What went through your mind physically, mentally?
Alvina Nadeem: [00:04:58] It was one big mass, actually. So it started off as about the size of a lemon. And then by surgery day, which was only three weeks later, it was like 16 cm. It was like a grapefruit.
Catherine Duranceau: [00:05:13] So it doubled.
Alvina Nadeem: [00:05:14] So yeah, so it doubled in size in three weeks. So luckily for me, my doctor had kind of gone through the if-then scenario with me of, “Okay, if we detect cancer, here's what we'll do. If we don't detect any cancer, here's what we'll do.” So I knew that during the operation, if they saw cancer, they would be doing a total hysterectomy. That means ovaries, uterus, everything is gone, the fallopian tubes, all of it. So you're essentially in an immediate surgical menopause and your menopause starts right there and then.
Catherine Duranceau: [00:05:46] Oh, no.
Alvina Nadeem: [00:05:46] There's no build-up.
Catherine Duranceau: [00:05:49] So it's one day to the next.
Alvina Nadeem: [00:05:51] Yeah. You wake up and you're in menopause, basically.
Catherine Duranceau: [00:05:53] But once your treatments were over – and you said it – the support that you got afterwards was almost none. You were left kind of by yourself.
Alvina Nadeem: Yeah.
Catherine Duranceau: How was that transition and what made you feel so alone?
Alvina Nadeem: [00:06:07] So our system is very good at very serious things. If someone gets a cancer diagnosis, you become a VIP patient, right? You're seen by specialists every three weeks, in my case, because you have to go in every three weeks and get your treatment and get your blood tests. So you're really followed up very regularly, and so you get used to that. You get used to that treatment during the active chemo phase.
But then when treatment ends, you're supposed to be happy that it ended that you don't have to go to a cancer center, but you got used to that safety net and it kind of becomes a crutch, almost. You don't get seen that often after. So in my case, it was, you have to come in for checkups every three months, not every three weeks. So that first initial wait time, it's nerve-wracking because now I'm like, “Well, what's keeping the cancer away? Because I'm not getting treatment anymore. How do I know that I'm okay?”
Catherine Duranceau: [00:07:05] That's the thing. How do I know? Because you don't know. You can't see it in your body.
Alvina Nadeem: [00:07:09] Yeah. So there's that immediate fear of like, “I don't know what to do with myself.” I also think that because of that same cycle – you get seen so often – that you don't really process what's happening mentally. You're just kind of in this routine. I'll give you a very clear example. You go in, you get treatment. A few days later, you feel really bad because you're sick and you just feel gross.
Catherine Duranceau: [00:07:33] It kills your immune system.
Alvina Nadeem: [00:07:37] Exactly, so you are not feeling good. Then your immune system and all your blood cells rebuild, but they rebuild just enough so that you get another hit of chemo. So then you're kind of in this roller coaster and you're stuck in this cycle, but you're so focused on that specific cycle itself of trying to feel better enough for your next treatment, that you don't really process…
Catherine Duranceau: [00:07:58] What's going on.
Alvina Nadeem: [00:07:59] …fully what's happening. You do, but not fully until it's over. And then you really sit in the quiet where you're home now and you're home alone because everyone's gone back to their life and you're just kind of like, “Wow, this just happened. I'm only 36. Like, what the F is this?” That's where you need more support, I think, whether it's mental health or even physical. Because for me, it really felt like I just had a car crash and I have this burnt-up car, and I'm supposed to drive it for the rest of my life, because I intend to drive it. I want to live, but how am I going to live in this burnt-up car?
Catherine Duranceau: [00:08:34] You kind of felt like you had a broken body after the experience.
Alvina Nadeem: [00:08:39] Yeah. I would go out for walks, and I was not able to walk around the block because my heart just would jump to 160 beats per minute just from walking, at 36 years old. I felt like I was 136 years old.
Catherine Duranceau: [00:08:54] But they didn't get you ready for that so that you would slowly be able to get your cardio back?
Alvina Nadeem: [00:09:01] There's no such plan. That's not part of the standard of care right now. But I hope through these conversations, we can bring in – whether it's through providers who are providing insurance and support – to continue that plan. There's something missing. There's a huge part missing.
Catherine Duranceau: [00:09:18] Sarah, I'm curious, do you think employers could help prevent situations when someone's feeling alone, there's no support team?
Sarah Beaudry: [00:09:26] Yeah, of course. You said earlier that this safety net, I think, is a really important thing to focus on in the organization. That's what we are trying to build when we go to workplaces to implement the best practices. So social support from the manager and for the colleagues is a really powerful tool that we want to implement in organizations. You have to do this before. So you want to create –
Catherine Duranceau: [00:09:55] Prepare.
Sarah Beaudry: [00:09:55] Yeah, yeah, yeah. It's really a prevention thing. You want to build this relationship of closeness and the trust, too. You really want to get together with your employees just to make sure they're safe, they want to be heard, and you want to hear them, too. And after that, if the employee goes on leave, you want to maintain the contact between you and them. You can ask them what are their boundaries? For example, are they comfortable if you're calling them? Can we maintain this contact? Some employees don't want to, and it's okay because every person has their condition, and it's all right. So, “Do you want me to call you? Or do you want me to email or text?” or whatever.
Catherine Duranceau: [00:10:39] You don't take it for granted. “Oh, well, if she wants me to call her…” No, it has to be clear.
Sarah Beaudry: [00:10:44] No, that's right. Because like I said, everybody is feeling this in a different way. And you said with the chemo, sometimes you're tired, you don't want to speak to anybody, and it's all right. So that's why you have to maintain those boundaries.
Catherine Duranceau: [00:11:01] Do you think you have to educate the managers, too? Because not everyone knows how to deal with those situations, because it doesn't happen every day?
Sarah Beaudry: [00:11:08] Yeah, of course. HR teams are good to give cues to managers to help them with that. We want the manager to be caring and that the employee can trust, too. So yeah, it's a must.
Catherine Duranceau: [00:11:20] It's a must, absolutely, in every business, of course. Alvina, how did that go for you to go slowly back to work? I know you had a strong relationship with your coworkers.
Alvina Nadeem: [00:11:30] Yes, I’m really nodding.
Catherine Duranceau: [00:11:31] Yeah, she’s like, “I love my coworkers,” so it was great. But still, I can understand, they don't know what reality you went through, so you're not always comfortable at giving all the details of what your everyday life was before. How did that transition back to work go for you?
Alvina Nadeem: [00:11:48] I have to say they were really good at a lot of what you were saying. That was already established, so that was great. And something that was said just now was that, it can't be just because a person's on leave, because then it makes it feel like…
Catherine Duranceau: [00:12:01] Fake?
Alvina Nadeem: [00:12:02] Questioning whether, is this for real or are they questioning? But if there's already a culture, it's easier for me to then see it as, “Oh no, this is just part of the culture. They actually care.” So that's how it was for me. It really felt like care and not wondering, “When are you coming back to work? Like, what is this?” I had a good relationship with my coworkers, my managers, and HR. That part was amazing.
I think what was harder is that once you are back, I feel like in general, just from my conversations with others who – as a patient partner, I am very involved. I'm seeing a pattern that there is this expectation that I'm back to “normal,” who I was before, but there's no normal. You don't return to that. I often say this to my husband and it may sound a little morbid, but I woke up from that surgery a different person. Literally, I'm different. I'm hormonally different, systemically different. I'm not that same person anymore. I'm not on that same trajectory of someone who didn't have cancer. So I think that part is hard because it's not a physical disability, so it's hard for people to recognize. I don't come in with a wheelchair. I'm not asking for a ramp. I'm asking for a metaphorical ramp. Maybe it looks like less hours; maybe it looks like fewer days; maybe it looks like working from home or picking and choosing clients for me who are closer to my home that accept working from home, etc. So it's those things, I think, that are kind of invisible that are harder to have a conversation around because then you're like, “Well, I don't want to sound like I'm high maintenance. I look young, I look fine. Someone on the street doesn't know that I went through this.” So I think those conversations become hard because then you're wondering, “Am I asking for too much? Do I have the right to ask for this?” You feel awkward having those conversations.
Catherine Duranceau: [00:13:54] And it's not as if you're coming back from a vacation or you took a sabbatical for a year and I'm back as the same person.
Alvina Nadeem: [00:14:02] Right?
Catherine Duranceau: [00:14:02] Is there something you would have done differently of getting back to work, the way you did? Or conversations you would have had or told your employer?
Alvina Nadeem: [00:14:10] So here's the thing. I ended up creating that safety network for myself because I went and was very proactive. I asked my doctors, “What should I do right now?” Because now I feel like I'm trying to rebuild my physical energy back myself, but it's not working because my heartbeat keeps jumping up, whatever. So I started working with a kinesiologist, but it was myself. I had to do that out of pocket. It wasn't necessarily covered. Having to navigate all these things is hard because you don't even know what care you need unless you ask, but no one's telling you, “Okay, now you should – here's the plan. You should now do this. Now you're well enough to do this, x, y, z.” So I worked with kinesiology, occupational therapists.
Catherine Duranceau: [00:14:56] And what exactly is that?
Alvina Nadeem: [00:14:58] So an occupational therapist, they help you figure out where you're at in terms of managing your time and organizing your tasks and your anxiety levels with all of that. And they help you rebuild to where you need to be. And then when you're ready to go back to work, they – I mean, there should be more follow-up, but that's where my issues were, so that's what I wanted to get to on that point. I was able to get back to work on a progressive return, but once the return ends, once I'm now full-time, I have no access to my occupational therapist. So now I'm like, “Wait. She brought me to this point, but how does she know that I'm going to do well?”
Catherine Duranceau: [00:15:35] You have no access time-wise?
Alvina Nadeem: Coverage-wise.
Catherine Duranceau: Okay, that's what you meant.
Alvina Nadeem: [00:15:41] So then you're like, “Okay, she brought me to this point, but is it sustainable?” Because now I'm going to get real work. Because when I'm in my progressive return, I'm not really doing my usual tasks. I'm doing a lower level.
Catherine Duranceau: [00:15:55] So that you can do your transition.
Alvina Nadeem: [00:15:57] So how do we measure my success? Maybe there should be a few more sessions.
Catherine Duranceau: [00:16:01] Good point. Once you're back at work, am I doing this well? Because it's maybe overwhelming for your body that is slowly getting back to five days a week.
Alvina Nadeem: [00:16:10] Yeah. Because then, if I don't feel well, the onus falls all onto me. I'm not an occupational therapist, so it's harder for me to be like, “Hey, employer, I don't feel good. Can we do something about it?” Versus, what if it came from the occupational therapist, this third party that's speaking for me saying, “I'm an expert, she is not okay. You need to do this.”
Catherine Duranceau: It's like a doctor.
Alvina Nadeem: “And this is considered an accommodation because this is a disability.”
Catherine Duranceau: [00:16:33] Yeah, absolutely.
Alvina Nadeem: [00:16:35] Whereas I'm not the expert.
Catherine Duranceau: [00:16:35] So Sarah, what concrete actions can someone take so that the person feels truly safe and comfortable going back to work?
Sarah Beaudry: [00:16:42] Action can be taken from the manager and the employees, too. You want to maintain the contact between the leave of absence, of course. When you talk to the manager when you're on leave, you can ask them questions. What are the resources? And the manager has to know the answers, too, so you want him to be well informed of what is offered. Is it EAP or a therapist, just for an example?
You want to adjust their task, their schedule, too. It's not just about the hours that the employee is going to make.
Catherine Duranceau: The workload?
Sarah Beaudry: [00:17:21] Workload, of course, yeah. You want to give maybe information to the colleagues, too, so how the person is feeling – if it's okay for him to share the information. Do you want to invite them to a dinner when he’s going to come back? How is it going to be in the field when he’s going to come back the first day? What are their needs? So it's all about the communication.
Catherine Duranceau: [00:17:45] And sometimes knowing what to say as a coworker when the person is back. Is there something you would have appreciated someone would have said, your coworkers?
Alvina Nadeem: [00:17:53] Well, honestly, for this part, like I was saying, it was great, because I went to the Christmas parties, they came out to the Ovarian Cancer Canada Walk of Hope that happens in September. We had this… It was there because there was already a culture of trust there that I felt comfortable enough to say to my employer, “Tell people because I don't want to be the one telling people. Can you guys tell them? I don't feel like being the announcer of what's happening.” For me, it took that weight off. So I do agree that it does require that partnership, but that partnership can only build when there's psychological safety already there.
Sarah Beaudry: Of course.
Catherine Duranceau: [00:18:30] By leaving for a long time, would you say there's also cognitive effects?
Sarah Beaudry: [00:18:34] I'm not a healthcare professional, but what I've seen on the relevant information that I've read on the subject, yeah, of course, you have problems with concentration; sluggishness is something, too. Maybe you're going to be a little bit longer to do a task.
Catherine Duranceau: [00:18:50] Because you're not the same person, Alvina was saying.
Sarah Beaudry: [00:18:53] You’re not the same, but you have all your experience; in your body, it's still there. Just maybe it gets some time to get to the same point.
Catherine Duranceau: [00:19:02] And maybe your vision is also different.
Alvina Nadeem: [00:19:04] Yeah. And you're aware of those differences too. Like you said, it hasn't left your body. So you're like, “I could do this.”
Sarah Beaudry: [00:19:10] Yeah. You know you can do it.
Alvina Nadeem: [00:19:11] I could do this in two hours. Now it’s taking me three days. What's going on?
Catherine Duranceau: [00:19:17] Does it make you mad?
Alvina Nadeem: [00:19:18] Of course. You don't understand what's happening. You’re like, “What is this?” I have friends who actually went back to work too fast after their own cancer diagnosis in higher positions and management, and literally, three months after, this person was on burnout because…
Catherine Duranceau: [00:19:37] She couldn't take it.
Alvina Nadeem: [00:19:38] Yeah.
Catherine Duranceau: [00:19:39] That's incredible. And your husband also went through something a little bit tough, but his transition back to work went quite well. What exactly was different?
Alvina Nadeem: [00:19:49] Yeah. So the thing is, when I was on leave, having two little kids, he got leave as well because it was like, “How do you adapt to this sudden change in life?” You’ve got to take – so he got some leave time as well. But I found that his team, the partnership between employer and insurer was much stronger in the sense that they were very proactive. He would get a call saying, “It's been X months, we wanted to check in. We wanted to offer you sessions with a therapist. Would you be interested to see, to help you decide if you're ready to go back and what you need?” He was able to say, “Yeah, okay, sure. Let's, let's try it.” Whereas like I was sitting there, like, “I didn't get that call. I'm the one going through cancer. The cancer person.”
Sarah Beaudry: [00:20:40] It’s me.
Catherine Duranceau: [00:20:42] Did you call saying, “My husband got the call. I didn't, guys.” No, I'm just kidding. Can’t do that.
Alvina Nadeem: [00:20:46] No, but it did make me go, “Oh, okay, I should call and ask to get some sessions, too,” because I didn't realize that. You don't know what you don't know. You don't know what you can ask for if you don't come from that background. I don't come from insurance.
Catherine Duranceau: [00:21:02] No, definitely. I wouldn't know, too. I’m learning. Definitely. And speaking of insurers, what tools would you say they need to have?
Sarah Beaudry: [00:21:10] As an insurer, you don't have to think like, “Oh, okay we're going to bring the employee back and we're going to close the file.” It's not the thinking that we want. So it's really thinking to be in the adaptability and what the person needs. You have several services, like you said, therapists, psychological help, rehabilitation, too. You want to offer all those things to the person. And after that, you want to promote different information tools and kits that exist in the market. You want to let them know that it exists. Like you said, you maybe don't even know.
Catherine Duranceau: [00:21:49] But before the process.
Sarah Beaudry: [00:21:51] Before, exactly. And after, when you're in it, you want to give them the information, too, so they can use it.
Catherine Duranceau: [00:21:58] It's a follow-up that needs to be done, too.
Sarah Beaudry: [00:21:59] Yeah, of course.
Catherine Duranceau: Absolutely.
[00:22:00 On screen] Key takeaways
Catherine Duranceau: [00:22:10] So we do have a funny anecdote or a touching one that you would like to share with us today.
Alvina Nadeem: [00:22:13] Yeah. So as part of my experience, I like to say, with cancer, when I realized that I would lose my hair, one of the things I did was, I started telling my kids the story of, “You know, Mom has this ball in her stomach that needs to be removed.” Because I didn't want to use the word “cancer” because I was afraid they would go on the play yard and say “cancer” and then they'll hear, “Oh, my grandma died of cancer.” So I was like, “No, I'm not using the word cancer.” But I had to kind of prepare them, so I was like, “Okay, well, you know, she's going to lose her hair from this really, really strong medicine. It's called chemotherapy, but it's so strong that it makes you lose your hair by accident. But we're going to have fun. We're going to buy some wigs.”
So that's what I started doing. I started to go on Amazon to buy different coloured wigs. The ribbon for ovarian cancer is teal, so I have a teal wig at home. I've got all these different colours, and just made it into a thing where it was funny and fun.
Catherine Duranceau: [00:23:08] It’s a clever way of sharing the story with your kids.
Alvina Nadeem: [00:23:10] Yeah, yeah.
Catherine Duranceau: [00:23:11] I like that.
[00:23:14 On screen] Points to remember
Catherine Duranceau: [00:23:19] Sarah, can you summarize our conversation?
Sarah Beaudry: [00:23:20] Yeah, of course. I think the key point here is to be open-minded, to be well-informed, too, of all the resources that can be available for the employees who are living with this kind of situation. You want to, like I said, maintain contact before, during the absence of leave. You want to adjust their tasks, their schedule. You want to build this culture of empathy, respect for all the colleagues to make sure that everybody can help, can give support.
After that, you always want to make some regular follow-up just to make sure the employee is feeling safe. Do they need something else? Do you need to adjust some things for them? So I think that's the basic idea.
Catherine Duranceau: [00:24:10] Absolutely. Ladies, thank you so much for your time. It has been such a great conversation, and so much courage. Thank you, Alvina.
Alvina Nadeem: [00:24:21] You’re welcome.
Catherine Duranceau: [00:24:22] Honestly, it's going to help other people that will go through similar tough journeys.
And Sarah, thank you so much for the tools that you shared with us.
Sarah Beaudry: [00:24:25] Yeah, thank you.
Catherine Duranceau: [00:24:36] That will serve, of course, lots of people that will be listening to the podcast.
And thank you for listening. If you have any questions, please don't hesitate and contact us at podcast@beneva.ca. If you'd like to have more information about the topic or discover other episodes, we invite you to go on Beneva’s website in the podcast section.
Stay tuned for another conversation that will guide you for future insurance and business needs.
[00:24:51 On screen]
Guests
Alvina Nadeem
Sarah Beaudry
Host
Catherine Duranceau
beneva
People protecting people
END OF TRANSCRIPT
Returning to work after cancer is an inspiring milestone. It can be both rewarding and challenging for employees who are still coping with the physical side effects of treatment, like fatigue, cognitive changes and emotional adjustments. Successful reintegration often depends on flexibility, understanding, and open communication between the employee, healthcare providers and the employer.
Alina Nadeem, engineer, coach, change management advisor and ovarian cancer survivor, talks about her story and the patient side of things. Sarah Beaudry, Workplace Health Senior Advisor at Beneva talks about how supportive measures and accommodations can rebuild an employee’s confidence, restore a sense of normalcy and help them pursue professional growth at a pace that respects their health and wellbeing.
Animation : Catherine Duranceau
Guest: Alvina Nadeem
00:00
25:00
TRANSCRIPTION
Audio time: 25:00
Catherine Duranceau: [00:00:04] Hi. Welcome to the Beneva podcast Ask the Experts. I'm your host, Catherine Duranceau. Today, we're diving into an important, yet sensitive topic: returning to work after a cancer diagnosis. Too often, both employers and employees are unaware of the resources available for a smooth transition back to work. So together, we'll look at how workplaces can make this transition easier and really make a difference along the way.
[00:00:28 On screen] Our guests
[00:00:30 On screen] Alvina Nadeem
Engineer, coach, change management advisor and ovarian cancer survivor
Alvina Nadeem: [00:00:32] Hi, I'm Alvina Nadeem. I am a mechanical engineer, a mom of two young boys, and I'm very passionate about human-centred design in healthcare.
[00:00:44 On screen] Sarah Beaudry
Workplace Health Senior Advisor at Beneva
Sarah Beaudry: [00:00:42] Hi, my name is Sarah Beaudry. I'm a workplace health advisor at Beneva, and my main goal at work is to build organizations that are caring, human, and inclusive.
[00:00:53 On screen] Roundtable
Catherine Duranceau: [00:00:56] Alvina, so glad to have you with us. You've overcome ovarian cancer with such courage. Can you share with us your story and how you went through such a difficult time?
Alvina Nadeem: [00:01:06] Yeah. Thank you so much for having me, first of all. I think just the act of having this conversation speaks a lot to me.
So in terms of my story, I was 36 years old. I, at the time, had two little boys who just had turned three and five, I think, if I remember correctly. It was a complete shock because I have no family history, I have no genetic predispositions or anything. I was not expecting to be someone who would be calling themselves a cancer survivor at 36. So yeah, it was a shock.
Catherine Duranceau: [00:01:38] How did you go through the treatments once you got that horrible news? How did that happen?
Alvina Nadeem: [00:01:43] I love talking about my story because I've come to realize that it is one of the good stories. Why I share it is not to be like, “Oh, look, I was so lucky.” No, it's to say, “Here's a blueprint. Can we recreate it? Can we do it again for others?”
In my case, I had a very proactive doctor who immediately took action. I was sent for ultrasounds, I was sent for imagery, and things went really fast. I also landed on a great, great oncologist who was just so good at partnering with me as a patient to develop a plan for me and make decisions and just make me feel that I can participate in this health experience.
Catherine Duranceau: [00:02:25] Which is more human as an approach.
Alvina Nadeem: [00:02:27] Yes, absolutely.
Catherine Duranceau: [00:02:28] How did you feel those symptoms? Because I think that was hard for you to know, “Is it cancerous? Do I have symptoms?” How did that go through?
Alvina Nadeem: [00:02:37] So this is where it's really important to talk about ovarian cancer. Ovarian cancer is really hard to diagnose. It's often called a silent killer. You don't want to Google ovarian cancer if you think you have it because it's scary. For me, I knew that something felt off. I would say early February is when I started to feel like there's something I need to go get checked, because things were just piling up. For example, I felt myself feeling really tired all the time. But again, I had two little kids. So I was like, you know, mom…
Catherine Duranceau: [00:03:07] You’re just always tired.
Alvina Nadeem: [00:03:08] Working mom, two boys keeping me busy. So I was like, you know…
Catherine Duranceau: [00:03:13] You’re a mom. Just take some naps.
Alvina Nadeem: [00:03:15] Yeah, yeah.
Catherine Duranceau: [00:03:16] No. It's not just the nap.
Alvina Nadeem: [00:03:17] Exactly. But then it started to kind of add up where I started to feel that I was getting headaches more often, migraines, things like that. I then started to notice that I was getting cramps before my period would start, and that was not normal for me. I was not someone who had cramps. Well, not…
Catherine Duranceau: [00:03:39] Your whole life.
Alvina Nadeem: [00:03:40] …since I was a teenager, you know what I mean? Like, the last time I had cramps, I was, like, 16 or something. So it was just little, small red flags were going up. I started to wonder, “What is this?” I work as a change management advisor, and the work I was doing was around digital transformation. So we're used to technology and I'm a technophile. I love technology, and as an engineer and all that. So I was playing with ChatGPT. It had come out, so I happened to use that for myself as kind of like a journal. I started to track what was happening.
Catherine Duranceau: [00:04:13] Your symptoms, being like, “What is this doing to my body? What is the answer?”
Alvina Nadeem: [00:04:18] Yes. It helped me, but I'm not saying that everyone should do this, but it helped me go get checked. It said, there's something you should – it was serious. This is not just a cramp.
Catherine Duranceau: [00:04:30] This is a red flag. Please take care of yourself.
Alvina Nadeem: [00:04:32] Yeah. Sometimes you can get certain symptoms and you think, “Oh, well, they'll go away,” but nothing was going away. It was just kind of stacking up. So that's when I was like, “No, no, I’ve got to go get checked.”
Catherine Duranceau: [00:04:42] And afterwards, you underwent surgery to remove those large masses and your ovaries too, and that brought you into menopause. Something rough to go through at the same time. How did you manage that? What went through your mind physically, mentally?
Alvina Nadeem: [00:04:58] It was one big mass, actually. So it started off as about the size of a lemon. And then by surgery day, which was only three weeks later, it was like 16 cm. It was like a grapefruit.
Catherine Duranceau: [00:05:13] So it doubled.
Alvina Nadeem: [00:05:14] So yeah, so it doubled in size in three weeks. So luckily for me, my doctor had kind of gone through the if-then scenario with me of, “Okay, if we detect cancer, here's what we'll do. If we don't detect any cancer, here's what we'll do.” So I knew that during the operation, if they saw cancer, they would be doing a total hysterectomy. That means ovaries, uterus, everything is gone, the fallopian tubes, all of it. So you're essentially in an immediate surgical menopause and your menopause starts right there and then.
Catherine Duranceau: [00:05:46] Oh, no.
Alvina Nadeem: [00:05:46] There's no build-up.
Catherine Duranceau: [00:05:49] So it's one day to the next.
Alvina Nadeem: [00:05:51] Yeah. You wake up and you're in menopause, basically.
Catherine Duranceau: [00:05:53] But once your treatments were over – and you said it – the support that you got afterwards was almost none. You were left kind of by yourself.
Alvina Nadeem: Yeah.
Catherine Duranceau: How was that transition and what made you feel so alone?
Alvina Nadeem: [00:06:07] So our system is very good at very serious things. If someone gets a cancer diagnosis, you become a VIP patient, right? You're seen by specialists every three weeks, in my case, because you have to go in every three weeks and get your treatment and get your blood tests. So you're really followed up very regularly, and so you get used to that. You get used to that treatment during the active chemo phase.
But then when treatment ends, you're supposed to be happy that it ended that you don't have to go to a cancer center, but you got used to that safety net and it kind of becomes a crutch, almost. You don't get seen that often after. So in my case, it was, you have to come in for checkups every three months, not every three weeks. So that first initial wait time, it's nerve-wracking because now I'm like, “Well, what's keeping the cancer away? Because I'm not getting treatment anymore. How do I know that I'm okay?”
Catherine Duranceau: [00:07:05] That's the thing. How do I know? Because you don't know. You can't see it in your body.
Alvina Nadeem: [00:07:09] Yeah. So there's that immediate fear of like, “I don't know what to do with myself.” I also think that because of that same cycle – you get seen so often – that you don't really process what's happening mentally. You're just kind of in this routine. I'll give you a very clear example. You go in, you get treatment. A few days later, you feel really bad because you're sick and you just feel gross.
Catherine Duranceau: [00:07:33] It kills your immune system.
Alvina Nadeem: [00:07:37] Exactly, so you are not feeling good. Then your immune system and all your blood cells rebuild, but they rebuild just enough so that you get another hit of chemo. So then you're kind of in this roller coaster and you're stuck in this cycle, but you're so focused on that specific cycle itself of trying to feel better enough for your next treatment, that you don't really process…
Catherine Duranceau: [00:07:58] What's going on.
Alvina Nadeem: [00:07:59] …fully what's happening. You do, but not fully until it's over. And then you really sit in the quiet where you're home now and you're home alone because everyone's gone back to their life and you're just kind of like, “Wow, this just happened. I'm only 36. Like, what the F is this?” That's where you need more support, I think, whether it's mental health or even physical. Because for me, it really felt like I just had a car crash and I have this burnt-up car, and I'm supposed to drive it for the rest of my life, because I intend to drive it. I want to live, but how am I going to live in this burnt-up car?
Catherine Duranceau: [00:08:34] You kind of felt like you had a broken body after the experience.
Alvina Nadeem: [00:08:39] Yeah. I would go out for walks, and I was not able to walk around the block because my heart just would jump to 160 beats per minute just from walking, at 36 years old. I felt like I was 136 years old.
Catherine Duranceau: [00:08:54] But they didn't get you ready for that so that you would slowly be able to get your cardio back?
Alvina Nadeem: [00:09:01] There's no such plan. That's not part of the standard of care right now. But I hope through these conversations, we can bring in – whether it's through providers who are providing insurance and support – to continue that plan. There's something missing. There's a huge part missing.
Catherine Duranceau: [00:09:18] Sarah, I'm curious, do you think employers could help prevent situations when someone's feeling alone, there's no support team?
Sarah Beaudry: [00:09:26] Yeah, of course. You said earlier that this safety net, I think, is a really important thing to focus on in the organization. That's what we are trying to build when we go to workplaces to implement the best practices. So social support from the manager and for the colleagues is a really powerful tool that we want to implement in organizations. You have to do this before. So you want to create –
Catherine Duranceau: [00:09:55] Prepare.
Sarah Beaudry: [00:09:55] Yeah, yeah, yeah. It's really a prevention thing. You want to build this relationship of closeness and the trust, too. You really want to get together with your employees just to make sure they're safe, they want to be heard, and you want to hear them, too. And after that, if the employee goes on leave, you want to maintain the contact between you and them. You can ask them what are their boundaries? For example, are they comfortable if you're calling them? Can we maintain this contact? Some employees don't want to, and it's okay because every person has their condition, and it's all right. So, “Do you want me to call you? Or do you want me to email or text?” or whatever.
Catherine Duranceau: [00:10:39] You don't take it for granted. “Oh, well, if she wants me to call her…” No, it has to be clear.
Sarah Beaudry: [00:10:44] No, that's right. Because like I said, everybody is feeling this in a different way. And you said with the chemo, sometimes you're tired, you don't want to speak to anybody, and it's all right. So that's why you have to maintain those boundaries.
Catherine Duranceau: [00:11:01] Do you think you have to educate the managers, too? Because not everyone knows how to deal with those situations, because it doesn't happen every day?
Sarah Beaudry: [00:11:08] Yeah, of course. HR teams are good to give cues to managers to help them with that. We want the manager to be caring and that the employee can trust, too. So yeah, it's a must.
Catherine Duranceau: [00:11:20] It's a must, absolutely, in every business, of course. Alvina, how did that go for you to go slowly back to work? I know you had a strong relationship with your coworkers.
Alvina Nadeem: [00:11:30] Yes, I’m really nodding.
Catherine Duranceau: [00:11:31] Yeah, she’s like, “I love my coworkers,” so it was great. But still, I can understand, they don't know what reality you went through, so you're not always comfortable at giving all the details of what your everyday life was before. How did that transition back to work go for you?
Alvina Nadeem: [00:11:48] I have to say they were really good at a lot of what you were saying. That was already established, so that was great. And something that was said just now was that, it can't be just because a person's on leave, because then it makes it feel like…
Catherine Duranceau: [00:12:01] Fake?
Alvina Nadeem: [00:12:02] Questioning whether, is this for real or are they questioning? But if there's already a culture, it's easier for me to then see it as, “Oh no, this is just part of the culture. They actually care.” So that's how it was for me. It really felt like care and not wondering, “When are you coming back to work? Like, what is this?” I had a good relationship with my coworkers, my managers, and HR. That part was amazing.
I think what was harder is that once you are back, I feel like in general, just from my conversations with others who – as a patient partner, I am very involved. I'm seeing a pattern that there is this expectation that I'm back to “normal,” who I was before, but there's no normal. You don't return to that. I often say this to my husband and it may sound a little morbid, but I woke up from that surgery a different person. Literally, I'm different. I'm hormonally different, systemically different. I'm not that same person anymore. I'm not on that same trajectory of someone who didn't have cancer. So I think that part is hard because it's not a physical disability, so it's hard for people to recognize. I don't come in with a wheelchair. I'm not asking for a ramp. I'm asking for a metaphorical ramp. Maybe it looks like less hours; maybe it looks like fewer days; maybe it looks like working from home or picking and choosing clients for me who are closer to my home that accept working from home, etc. So it's those things, I think, that are kind of invisible that are harder to have a conversation around because then you're like, “Well, I don't want to sound like I'm high maintenance. I look young, I look fine. Someone on the street doesn't know that I went through this.” So I think those conversations become hard because then you're wondering, “Am I asking for too much? Do I have the right to ask for this?” You feel awkward having those conversations.
Catherine Duranceau: [00:13:54] And it's not as if you're coming back from a vacation or you took a sabbatical for a year and I'm back as the same person.
Alvina Nadeem: [00:14:02] Right?
Catherine Duranceau: [00:14:02] Is there something you would have done differently of getting back to work, the way you did? Or conversations you would have had or told your employer?
Alvina Nadeem: [00:14:10] So here's the thing. I ended up creating that safety network for myself because I went and was very proactive. I asked my doctors, “What should I do right now?” Because now I feel like I'm trying to rebuild my physical energy back myself, but it's not working because my heartbeat keeps jumping up, whatever. So I started working with a kinesiologist, but it was myself. I had to do that out of pocket. It wasn't necessarily covered. Having to navigate all these things is hard because you don't even know what care you need unless you ask, but no one's telling you, “Okay, now you should – here's the plan. You should now do this. Now you're well enough to do this, x, y, z.” So I worked with kinesiology, occupational therapists.
Catherine Duranceau: [00:14:56] And what exactly is that?
Alvina Nadeem: [00:14:58] So an occupational therapist, they help you figure out where you're at in terms of managing your time and organizing your tasks and your anxiety levels with all of that. And they help you rebuild to where you need to be. And then when you're ready to go back to work, they – I mean, there should be more follow-up, but that's where my issues were, so that's what I wanted to get to on that point. I was able to get back to work on a progressive return, but once the return ends, once I'm now full-time, I have no access to my occupational therapist. So now I'm like, “Wait. She brought me to this point, but how does she know that I'm going to do well?”
Catherine Duranceau: [00:15:35] You have no access time-wise?
Alvina Nadeem: Coverage-wise.
Catherine Duranceau: Okay, that's what you meant.
Alvina Nadeem: [00:15:41] So then you're like, “Okay, she brought me to this point, but is it sustainable?” Because now I'm going to get real work. Because when I'm in my progressive return, I'm not really doing my usual tasks. I'm doing a lower level.
Catherine Duranceau: [00:15:55] So that you can do your transition.
Alvina Nadeem: [00:15:57] So how do we measure my success? Maybe there should be a few more sessions.
Catherine Duranceau: [00:16:01] Good point. Once you're back at work, am I doing this well? Because it's maybe overwhelming for your body that is slowly getting back to five days a week.
Alvina Nadeem: [00:16:10] Yeah. Because then, if I don't feel well, the onus falls all onto me. I'm not an occupational therapist, so it's harder for me to be like, “Hey, employer, I don't feel good. Can we do something about it?” Versus, what if it came from the occupational therapist, this third party that's speaking for me saying, “I'm an expert, she is not okay. You need to do this.”
Catherine Duranceau: It's like a doctor.
Alvina Nadeem: “And this is considered an accommodation because this is a disability.”
Catherine Duranceau: [00:16:33] Yeah, absolutely.
Alvina Nadeem: [00:16:35] Whereas I'm not the expert.
Catherine Duranceau: [00:16:35] So Sarah, what concrete actions can someone take so that the person feels truly safe and comfortable going back to work?
Sarah Beaudry: [00:16:42] Action can be taken from the manager and the employees, too. You want to maintain the contact between the leave of absence, of course. When you talk to the manager when you're on leave, you can ask them questions. What are the resources? And the manager has to know the answers, too, so you want him to be well informed of what is offered. Is it EAP or a therapist, just for an example?
You want to adjust their task, their schedule, too. It's not just about the hours that the employee is going to make.
Catherine Duranceau: The workload?
Sarah Beaudry: [00:17:21] Workload, of course, yeah. You want to give maybe information to the colleagues, too, so how the person is feeling – if it's okay for him to share the information. Do you want to invite them to a dinner when he’s going to come back? How is it going to be in the field when he’s going to come back the first day? What are their needs? So it's all about the communication.
Catherine Duranceau: [00:17:45] And sometimes knowing what to say as a coworker when the person is back. Is there something you would have appreciated someone would have said, your coworkers?
Alvina Nadeem: [00:17:53] Well, honestly, for this part, like I was saying, it was great, because I went to the Christmas parties, they came out to the Ovarian Cancer Canada Walk of Hope that happens in September. We had this… It was there because there was already a culture of trust there that I felt comfortable enough to say to my employer, “Tell people because I don't want to be the one telling people. Can you guys tell them? I don't feel like being the announcer of what's happening.” For me, it took that weight off. So I do agree that it does require that partnership, but that partnership can only build when there's psychological safety already there.
Sarah Beaudry: Of course.
Catherine Duranceau: [00:18:30] By leaving for a long time, would you say there's also cognitive effects?
Sarah Beaudry: [00:18:34] I'm not a healthcare professional, but what I've seen on the relevant information that I've read on the subject, yeah, of course, you have problems with concentration; sluggishness is something, too. Maybe you're going to be a little bit longer to do a task.
Catherine Duranceau: [00:18:50] Because you're not the same person, Alvina was saying.
Sarah Beaudry: [00:18:53] You’re not the same, but you have all your experience; in your body, it's still there. Just maybe it gets some time to get to the same point.
Catherine Duranceau: [00:19:02] And maybe your vision is also different.
Alvina Nadeem: [00:19:04] Yeah. And you're aware of those differences too. Like you said, it hasn't left your body. So you're like, “I could do this.”
Sarah Beaudry: [00:19:10] Yeah. You know you can do it.
Alvina Nadeem: [00:19:11] I could do this in two hours. Now it’s taking me three days. What's going on?
Catherine Duranceau: [00:19:17] Does it make you mad?
Alvina Nadeem: [00:19:18] Of course. You don't understand what's happening. You’re like, “What is this?” I have friends who actually went back to work too fast after their own cancer diagnosis in higher positions and management, and literally, three months after, this person was on burnout because…
Catherine Duranceau: [00:19:37] She couldn't take it.
Alvina Nadeem: [00:19:38] Yeah.
Catherine Duranceau: [00:19:39] That's incredible. And your husband also went through something a little bit tough, but his transition back to work went quite well. What exactly was different?
Alvina Nadeem: [00:19:49] Yeah. So the thing is, when I was on leave, having two little kids, he got leave as well because it was like, “How do you adapt to this sudden change in life?” You’ve got to take – so he got some leave time as well. But I found that his team, the partnership between employer and insurer was much stronger in the sense that they were very proactive. He would get a call saying, “It's been X months, we wanted to check in. We wanted to offer you sessions with a therapist. Would you be interested to see, to help you decide if you're ready to go back and what you need?” He was able to say, “Yeah, okay, sure. Let's, let's try it.” Whereas like I was sitting there, like, “I didn't get that call. I'm the one going through cancer. The cancer person.”
Sarah Beaudry: [00:20:40] It’s me.
Catherine Duranceau: [00:20:42] Did you call saying, “My husband got the call. I didn't, guys.” No, I'm just kidding. Can’t do that.
Alvina Nadeem: [00:20:46] No, but it did make me go, “Oh, okay, I should call and ask to get some sessions, too,” because I didn't realize that. You don't know what you don't know. You don't know what you can ask for if you don't come from that background. I don't come from insurance.
Catherine Duranceau: [00:21:02] No, definitely. I wouldn't know, too. I’m learning. Definitely. And speaking of insurers, what tools would you say they need to have?
Sarah Beaudry: [00:21:10] As an insurer, you don't have to think like, “Oh, okay we're going to bring the employee back and we're going to close the file.” It's not the thinking that we want. So it's really thinking to be in the adaptability and what the person needs. You have several services, like you said, therapists, psychological help, rehabilitation, too. You want to offer all those things to the person. And after that, you want to promote different information tools and kits that exist in the market. You want to let them know that it exists. Like you said, you maybe don't even know.
Catherine Duranceau: [00:21:49] But before the process.
Sarah Beaudry: [00:21:51] Before, exactly. And after, when you're in it, you want to give them the information, too, so they can use it.
Catherine Duranceau: [00:21:58] It's a follow-up that needs to be done, too.
Sarah Beaudry: [00:21:59] Yeah, of course.
Catherine Duranceau: Absolutely.
[00:22:00 On screen] Key takeaways
Catherine Duranceau: [00:22:10] So we do have a funny anecdote or a touching one that you would like to share with us today.
Alvina Nadeem: [00:22:13] Yeah. So as part of my experience, I like to say, with cancer, when I realized that I would lose my hair, one of the things I did was, I started telling my kids the story of, “You know, Mom has this ball in her stomach that needs to be removed.” Because I didn't want to use the word “cancer” because I was afraid they would go on the play yard and say “cancer” and then they'll hear, “Oh, my grandma died of cancer.” So I was like, “No, I'm not using the word cancer.” But I had to kind of prepare them, so I was like, “Okay, well, you know, she's going to lose her hair from this really, really strong medicine. It's called chemotherapy, but it's so strong that it makes you lose your hair by accident. But we're going to have fun. We're going to buy some wigs.”
So that's what I started doing. I started to go on Amazon to buy different coloured wigs. The ribbon for ovarian cancer is teal, so I have a teal wig at home. I've got all these different colours, and just made it into a thing where it was funny and fun.
Catherine Duranceau: [00:23:08] It’s a clever way of sharing the story with your kids.
Alvina Nadeem: [00:23:10] Yeah, yeah.
Catherine Duranceau: [00:23:11] I like that.
[00:23:14 On screen] Points to remember
Catherine Duranceau: [00:23:19] Sarah, can you summarize our conversation?
Sarah Beaudry: [00:23:20] Yeah, of course. I think the key point here is to be open-minded, to be well-informed, too, of all the resources that can be available for the employees who are living with this kind of situation. You want to, like I said, maintain contact before, during the absence of leave. You want to adjust their tasks, their schedule. You want to build this culture of empathy, respect for all the colleagues to make sure that everybody can help, can give support.
After that, you always want to make some regular follow-up just to make sure the employee is feeling safe. Do they need something else? Do you need to adjust some things for them? So I think that's the basic idea.
Catherine Duranceau: [00:24:10] Absolutely. Ladies, thank you so much for your time. It has been such a great conversation, and so much courage. Thank you, Alvina.
Alvina Nadeem: [00:24:21] You’re welcome.
Catherine Duranceau: [00:24:22] Honestly, it's going to help other people that will go through similar tough journeys.
And Sarah, thank you so much for the tools that you shared with us.
Sarah Beaudry: [00:24:25] Yeah, thank you.
Catherine Duranceau: [00:24:36] That will serve, of course, lots of people that will be listening to the podcast.
And thank you for listening. If you have any questions, please don't hesitate and contact us at podcast@beneva.ca. If you'd like to have more information about the topic or discover other episodes, we invite you to go on Beneva’s website in the podcast section.
Stay tuned for another conversation that will guide you for future insurance and business needs.
[00:24:51 On screen]
Guests
Alvina Nadeem
Sarah Beaudry
Host
Catherine Duranceau
beneva
People protecting people
END OF TRANSCRIPT