Episode 10: Navigating Cancer as a Young Person

We're back with Nicole and Amin! On this episode, they talk more about the process of navigating cancer as a young person. Amin shares more about the challenges she experienced including taking a break from her career and making the decision to freeze her eggs. She also talks about the importance of patient advocacy and how she is able to advocate for herself. Make sure to follow Amin Jaswal on Instagram to follow her on her journey -  https://www.instagram.com/aminjaswal/

For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca

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Transcript

Last time on the gosh podcast,

Amin

having myself set those boundaries was really important. And I think everyone honoring that was really important to me. Because it created us It helped me create a safe space and helped me create like a positive space.

Stephanie

Thanks for listening to the gosh podcast. Gosh stands for the Gynecologic Oncology sharing hub, an open space for real and evidence based discussions on gynecologic cancers. We'll share the stories of tiny cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecologic cancers. Our podcast is produced and recorded on a traditional unceded territories of the musqueam Squamish and soya tooth nations. It is produced by the gynecologic cancer initiative, a province wide initiative of British Columbia with the mission to accelerate transformative research and translational practice on the prevention, detection, treatment and survivorship of gynecologic cancers.

Hi, I'm Nicole Kay and I'm Stephanie Lam, and you're listening to the Gosh podcast.

Nicole

What did you find being you know, being young and diagnosed with cancer, what
would you say would be the ultimate challenge that you faced during your treatment?

Amin
 
Oh, there's like, oh, there's a lot of different things.
 
One is, you know, I couldn't work when I was diagnosed, you know, I was in so much physical pain before. Even before my diagnosis, I had taken time from my career, because I just, 
I, we didn't know what was going on with me, I thought it was like stress, 
exhaustion, you know, all these things, and then finally found out what it actually 
was. And I was in so much back pain, and pelvic pain. So I feel like career wise, it 
really stalled. My, you know, where I was in terms of my job. But weirdly, I feel like, 
it changed the trajectory of my life, and like what I want in life, in terms of my 
career, and so many different aspects of it, of my world. So, in that sense, I feel like,
you know, cancer can change at basically every aspect of your life. Like for me, it's 
like career and family, my, my, you know, the fact that I had to accept within the 
week that I got diagnosed, I was diagnosed on Tuesday, and by Friday, I met a 
fertility doctor. And that doctor told me that, you know, I'll never be able to carry 
children. Because unfortunately, with the type of cancer I had, I had to have 
maximum radiation that couldn't cover my ovaries. So it has has no chance of 
coming back in the ovaries. So and when they hit your uterus with that much your 
whole abdomen actually, with that much radiation, like your uterus will not be able 
to, it's not going to function after so I could never carry a child, or, you know, or any
of that. So that I think is a big factor. You know, before this, I never thought I 
wanted children. I was like, I'd never, I didn't know if it was gonna be in my cards. 
But I think it's different when the choice is taken from you than you making it 
yourself. And that was a really hard one for me, was just being young and not 
having that choice. So luckily, I you know, the, I was given a small window to free 
some eggs. Unfortunately, with cancer, you don't really get enough time. I think 
when when women do not regularly go through the fertility journey of getting an 
egg retrieval, they're given a couple months to cleanse their body and start right at 
the beginning of a cycle, I had to start in the middle of my cycle when my, my, my 
uterus was just like, not in a Happy Places, not an environment.

So you know, they got as many eggs as they could, it wasn't a lot. It wasn't really
close. But you know, at least to me, it was something, it's an opportunity. And that's
I was it felt really important to me to do that because it was just an opportunity.
And regardless, I feel like if I do have children down the road, through the egg
retrieval or not I always I was thought I would have a colorful family. So regardless, I
you know, who knows how how things are gonna go down the road, but I'm just
really open to the fact that I have that I could have a future and that's to me is more
than enough. It was the only thing is just coming to the terms of like having to let
go. That part of my body and, and, and really, I dealt with a really deep loss that I
associated with it. I don't know what I I'm still trying to understand what that is, I
don't know if it's like this. I was talking about this the other day, I don't know if this
is like a subconscious thing as women if we just attach our value to our ability to
have children, but I just felt like I lost my womanhood when I lost my ability to give
birth. And for some reason, I felt like I attached my, my value, in some sense as a
woman to that. And I know that obviously, as women, we are out, we're more than
our abilities. But I think, you know, to what it felt like to me internally was like, Oh,
well, this is something I should be able to do. And now I can't do it anymore. So
yeah, I think that I really am I'm having to really work through in, in really valuing
myself outside of something like that, because that's something that so many
women can't do. And I, I find it really interesting how subconsciously like, I never
thought about it before, but how it's Yeah, how we how that happens, or how we
might feel that way.

Nicole

I don't think we're prepared, like cancer or not, I don't think as women, we're
prepared for the fact that it doesn't just happen. Like, I feel like we're taught that,
like, that's what, you know, part of our purpose and what our bodies were made for,
we can get pregnant and give birth and create life. And it's not really talked about
the fact that how quickly at the age of you know, your early 30s how fast your
fertility starts to, like sky down. And you know, the I don't know if you found this,
but I was shocked when I went into the fertility clinic of how many young couples
were there. I expected to not be as busy. I expected older or same sex couples. And I
was shocked at how many young young couples were there and it was packed
every single morning. I didn't expect it to be so packed. It was eye opening. Like I'm like how you know, then you start to learn more about infertility and how prevalent it is. And how is nobody talking about that?

Amin

Well, that's the thing. It's a conversation that I feel that people don't talk about, like 
it's like almost like a taboo subject it's something that people are maybe I hope that
this isn't the case but I think a lot of people attach shame to it and it should not be 
something that we attach shame to because i think i think it comes down to 
attaching your value to your ability to give birth or your ability to carry a child and 
there's you know, there's no shame in that i think that you know, we all have we 
can all have children in very different ways if we choose that that's something that 
we want in our lives or how we want to live our lives but I think attaching our 
womanhood or our manhood for men to you know if they can't if they can't, you 
know be a part of the process then it is I think we I think as people we just shouldn't
be attached to like our abilities to to give life but yeah, that's that's one it was really
interesting when I was in the fertility clinic i i don't know i think up for me it was a 
lot of it was a mixture I had the first time I was in the clinic I went with my sister and
my cousin they both came with me and I actually broke down after the appointment
I in the lobby the core couple was sitting there and I think they saw they saw me 
obviously just crying because I was just like oh my god I never gonna be able to 
have kids. I was like and then I was like this is just so crazy to me that you know 
that I have cancer and that all this was happening I was this is all soul overwhelmed
with all these feelings. And yeah, I but it was interesting going through the whole 
process of doing the egg retrieval will going in there every every couple days for the
ultrasound and and having to go get the drugs from them and having to prick 
myself it was quite a process. And but also like just seeing all the couples in there. I 
think a part of me felt like really almost in a sense like alone because I was going to 
this by myself I'm not attached, I don't have a partner. So that to me was like oh, 
well it kind of it kind of hit me hit home that I was like oh, it's hard like not having 
that support. Going through this and or even just through this journey all together. 
And I think having cancer at a young age, when you don't have a partner is also like
the love life side of it is really hard. And even now just like finding somebody after 
you've had cancer, it's kind of difficult because you know It's making sure that you 
find somebody that will accept you. Regardless, you know, with everything that's 
happened in your journey, and that's not going to be afraid of what if you get it 
again, or, you know, who knows where your life could go, and just somebody that 
accepts you, regardless of what's happened in your life. And I think that, to me now 
is more important now than ever. in finding the right person to spend my time with, 
because I think to me now, time is even, like it was valuable before, but I feel like a 
value it like, a million times more. Yeah, yeah. So yeah, there's a lot of different 
aspects, I think, to our lives that are so affected when we're young with cancer.

I, yeah, I don't even know where else to go. Yeah, I could either open to any part you want.

Nicole

For sure. We could spend a lot of time on that. Yeah.

Amin

Did your did your family come and support you through a lot of your treatments? Or
Oh, yeah, well, my sister, my sister, my twin, I have a twin. So my mom actually
came with me to all my chemos and my hurt between her and my dad, they came
with me to most of my treatment. My dad, it was it's harder because he's older, but
he would drive me in the beginning. But then I found that he tends to like, when
he's driving tends to break. And I would when I was nauseated, I was like, Dad, just
gonna throw up in the car. I can't do this. I can't, I can't with your driving. But so my
sister and it was, I think a little hard for him to be coming to all my appointments.
Because every day I would have to go into go there five days a week for radiation
every day, plus, you know, blood tests, appointments with the doctor. Some days,
I'd be there for a couple hours. And then when I had chemo, I'd be there. In the for
the first rounds of chemo, it was about three to four hours. But then when I started
my second two chemos, I was there all day for like eight hours for them to
administer all the chemo. So as a full day thing. Luckily, I had my sister who would,
who would come with me to everything between her and my cousin. And then at
home, my mom really took care of me, she always made sure I ate she would wake
me up and make me like actually, at any time at night, like I remember waking her
up at like three in the morning be like mom, I'm so hungry from all these steroids.
And I had a really hard time because I couldn't. I had a hard time. Like, I couldn't
even bathe myself, my mom would have to help me shower. And I you know, just in
just like helping me get from my bed to like the couch and stuff. So that was kind of
hard in the beginning, I think losing your sense of freedom. Yeah, it was really hard
for me. I remember I was trying to cut an apple and I got winded and I just sat down
on the kitchen floor and cried and my dad was like, it's okay. He's like, let me cut it
for you. You know, I remember that moment. Because I that was a moment where I
was just like, I can't do anything like the way I used to. And he him telling me, you
know, it's okay, you know, you're, you're you can't do it right now. But you'll be able
to do it again soon. And that to me meant a lot. And he was like, just let me do it for
you for now. He's like, just let us help you. And really having a good family support
was, I'm so fortunate to have had that. And I think it's really important to have
people around you when you're going through something like this and letting people
and I know it's hard. Like I I would be afraid to go for like walks because I found I
would get really tired sometimes. So my sister would come with me and you know,
she's like, if you can't do it, I will pick go grab the car and we'll pick you up. I'm like,
don't worry. It's okay. They remember one day after one of my appointments. It was
downtown. It was actually another doctor's appointment in the area close to PC
cancer, Vancouver. And I remember telling her Oh, I really want to go to Indigo. I
want to go to chapters and you know that that one right on Broadway. Yeah. Go
there. It's a big and then we can walk through and it was I think they were putting
up there. I think it was like the fall Christmas display displays were coming up. And
we were it was only a week we parked only like a block and a bit from there. And
when we're walking over I forgot I was so when did we have to stop into furniture
stores and I sat on couches, and both of them because it was a steady incline. like
walking up the road there. Yeah. And I was like, Oh my God. And then when we got
there, I walked through a bit. And then I went and sat in Starbucks and and she was
like, just get yourself something to drink and I'll go get the car. So I was like, I'm too
tired to go upstairs and look at everything. So it was kind of you know, it was just
coming to these these realizations that I I just wasn't able to do have the energy
that I had before, but it was okay. And that I would get it back eventually. And yeah,

Nicole

I think that was a really hard one that happened to me. I, I was feeling half decent. And I got this idea that I would walk, I think I was meeting somebody, and then I just decided to walk there and walk back. And on my way back, I ran into an ex boyfriend. And he was like, Oh, hey, he, like pulled this car over was like, Hey, how's it going? And we're like, chatting. And then I got, like, you know, it just hits you. And all of a  sudden, I was like, I'm gonna faint, like, I've seen like, like, black and dizzy. And I  just didn't like I sat on the side of the road. He was like, are you okay? And then to  have be like, like, just honest, like, I have cancer, like, I just had chemo like two  days ago. I'm sorry, this is so embarrassing. You know, you're young, and you're
like, I don't be, you know, my body can I think I thought my body can just adapt, it'll
be fine. And like, not wanting to accept the realization of like, this is major, and you
have to slow down and just let it rest. Let it be here. Just know that like you said,
like, it's, it's temporary. But you're not going to be able to do these things. But it
does come back. But I think that's hard to accept.

Amin
 
Yeah, did you I one thing, I feel like when the rest thing like telling yourself that Oh,
rest is actually you, you're doing work when you're resting. And I think I remember
feeling like so I remember telling my sister I was like, I feel like, I'm so useless right
now. I feel like I'm doing nothing, like all I'm doing is laying around sleeping. And I'm
not doing anything with my time. And, and her telling me, her and my cousin were
telling me like, you know, this is this is your body's doing work you resting is doing
what's best for you, you're actually doing a lot you're your body's fighting. Like, of
course, you're you might feel like that. But because I felt like I was like all I'm doing
is laying around and I couldn't really I couldn't keep my eyes open some time. So it
was just in my head would hurt. When I when it didn't, I would just like be binge
watching Netflix. And then but other than that, I'm like, I was like, I'm not doing
anything with my time right now. And yeah, I think getting over that feeling of like,
feeling like you're just not doing anything with your time is, is one that you have to,
really, but it's one that you have to kind of knock it and be like and tell yourself,
Hey, no, actually, my body is doing so much right now. And I just need to give it like
grace and give it the space to like, do what it needs to do. And let your mind rest
because your mind needs to rest.

Nicole

Yeah, absolutely. So now that you've been through this journey, is there anything
you would do differently?

Amin
I feel like, I don't want to say there's anything that I would do differently. I kind of wish that I
was able to able to be diagnosed obviously earlier, I wish that I was able to be
diagnosed even six months earlier, maybe then my body wouldn't have had to have
gone through as much radiation, or as much chemo. Maybe it would have been
small enough. That was actually Yeah, I don't think so I don't think even taking my
cervix out would have made a difference. I try not to dwell too much on that. I feel
like everything in my life is happening. The way that it's supposed to happen. And
whatever happened happened. And I think one thing I would do differently was not
be so hard on myself, I think I was really hard on myself when I started the journey.
I kept thinking like I should do be able to do better, I should be able to do more. And
I think I was really hard on my body. At first I felt really like a big Miss trust with my
body was angry with it. I was I felt betrayed by my body. And there's a lot of
sadness that was associated with that. And now it's you know, I really had to
change that mindset. And you know, I couldn't be mad at my body. My body was
doing the best it could it was just being invaded by this monster. And that's one
thing is like just being more graceful with myself and my body and and now it's
more I'm really just mourning the person I was before this and really getting to
know this new person that I become and but I think that would probably be the one
thing I would just be a little nicer to myself and be a little more graceful.

Nicole
Is there anything that you wish you knew before you started your journey?

Amin
Hmm, that's a good question. I just I think I wish I knew more about just the cancer
journey. I wish I knew more about the whole treatment process how it would work. I
wish I had actually been known about the whole the fact that you could you would
be infertile after radiation and chemo It's not like that for everyone. But for just in
my case, I kind of wish I had known this stuff before. And maybe I would have
thought of freezing my eggs before. But you know, even that, that in itself, I don't
actually regret it. Like the fact that it happened when it happened. I feel like if it's,
you know, if I'm meant to have kids that way, I am. If I'm not, I'm not. But I think it's
more just knowing, being more informed, it would have been nice to have been
more informed than I could have maybe fought for myself sooner and pushed more
for myself sooner. I think one thing is like knowing that I think one thing I would
have wished I could have told myself back then was not to doubt myself. Because I
think initially when I was being told by physicians that it was something else, but it
was this or that, and that nothing was going on. That I started doubting myself,
because I was like, Okay, well, actually, this person is qualified. So you know,
they're telling me otherwise, not doubt my gut. So I think that's one thing I wish I
would have told myself is like, Hey, don't don't ever doubt yourself. You're, you
know, what's best for your body, you know, what's going on, and trust yourself.
Because I think once I once that, that seed of doubt, had started growing, it was
really hard for me, to regain that trust within myself. Because I think once you start,
start losing trust with yourself, that's when you really start to doubt was just you
doubt yourself. And I already felt this sense of betrayal and mistrust with my body
that I was kind of I, I started really doubting, like, what, what my body was capable,
I started doubting myself in a sense. And now it's like trying to regain that
relationship with my within myself, it's been like, that's been a journey of its own. I
think it's been a really good journey. It's been a healthy journey. I've been learning
a lot about myself. But I think that's one thing is just trusting who you are trusting
that you know, what's best for you. It was a is a big one. Especially when you're
going down this path?

Nicole
Yeah, absolutely. I think as women, I think that's a really big challenge. But I think in this space in the gynee cancer space, because it could be so many other things. And I feel like what you're sharing is more common than not experience, it's similar to the experience that I
had is, oh, well, it could be this or it could just be your period, or, you know, I got it
could be yeast infection, it could be bV, it could be your IUD like, and so the
seriousness of it was not taken right away. And that I think, is really challenging.
And that's why I think, as young women and women in general, we need to be
educated on what the signs and symptoms are. And unfortunately, we have to be
advocates for ourselves.

Amin
If we don't, well, if you don't advocate for yourself, nobody else? Well, that's one
thing I learned is like, your health is everything. If you don't have your health, you
have nothing. And yeah, you know, you have to you have to use your voice
otherwise, like who else is going to do that for you? And that's really, it's really
interesting that you say that, that you had a similar experience. I just feel like
women in general, sometimes aren't. are kind of like, I don't know, if we're, I don't
want to say this in a general way. But like, sometimes it's like, oh, are we being
dramatic? Oh, am I being you know, you start to you start to question yourself,
because it's like, oh, it could be it can be it could be a lot of different things. But to
me, what's important is that you rule out the worst thing first, then you work your
way back to the more general things. Because if you if you just want to call it like
one of the common things, what if you just what if you lost that gap? You know, you
missed that gap of like, catching something that was really wrong. Mm hmm. That's,
that's potentially you know, fatal. Right. So I think it's really likely early stage and Yeah,
exactly. And what I know, I don't know how it was for you, but I know what the type
of cancer I had, when it starts to progress, it accelerates quite quickly, like when I
was from the time I was diagnosed, and the time that I started my treatment, my
tumor grew a third of the size within, like, how many It was 12 weeks because I got
diagnosed in June and I started my treatment end of August because my body
needed some time in between the retrieval to my ovaries to go back down to the
regular size. So yeah, by the time I start my treatment, my tumor had grown 1/3 of
its size. So by when they start when they start to accelerate, it's like you know, you
really Time is not on your side and that's why it's so important that even just that
physicians and just in the in the health care world that you know, you rule out the
worst thing first I that's I don't know. For me, that's, I think from a patient
standpoint. That's what I feel like we really need to do. And then work your way
back to, you know, other things like endo or whatever else you might think it could
be, you know?

Nicole
Yeah, exactly. Exactly.

So, you know, now that you're, you're six months out, how is your recovery going?

Amin
So that's such an interesting discussion. One thing I've been feeling is like, I feel
like, you know, we talk about going through treatment, we talk about the diagnosis
and the treatment, but we don't talk about life after. And it was one thing I felt like
was, you know, when I went through treatment, when I, when I was diagnosed with
the treatment, I felt like that really ripped, it destroyed my body destroyed, like my
mind, my emotions, like and now after treatment, and that's when you really start
to put the pieces of yourself back together, is when you're going into remission. And
right now, that's really what I'm working on, I after treatment with with, with the
amount of radiation I had to my abdomen, it's really, like, caused a change in my
body. And I'm really starting to learn different things going on in my body, I've been
having a lot of digestive issues, like gut issues, which are things like nobody talks
about, like, that happens after, you know, my, yeah, the just, there's a lot of things
that don't work as late the same as they did before. And like, you know, my
frequency having to go to the washroom, things like that. I'm having to, like, learn
my new normal and really, hopefully, like, get back into like, a good groove of like
my life, but there are a lot of long term side effects.

Yeah, that's one thing I'm in. I'm in menopause, medically induced menopause, but I have
started hormone therapy, okay. So I do like actually use, I do be med so I do like
progesterone and estrogen. Take it by mouth. And then I also actually do the
estrogen syringe, which you put in like, naturally as well, just to help like create, like
more of a healthier environment in there, more or less to city. But yeah, there's also
that and then there's, there's there's the the side of it, we're using having to use
dilators has been like a struggle for me. I don't really like them. So I've been finding
like alternate dilators that will like work better for me. Because the whole I've been
struggling with the with like my vaginal canals like, like the narrowing issue. When I
really built that whole thing, like really freaks me out. I'm like, Oh, God, I don't really
want those problems. Like tippy toe. And the idea of that happening, instinct
permanent within your body is just like, can cause like a whole other issue when it
comes to intimacy down the road, like when I do find a partner. So I really, I just
want my body to feel like it did before but I'm really I'm starting to have to accept
that this is, you know, I just have to get to know it. Now I'll get to know what who
it's become now and like try to find the new way forward with it.

Nicole

So if they didn't recommend this pelvic, physio, pelvic floor physio is very helpful. After the radiation, like if you have any scar tissue, or like residual pain, it is I found it very, very helpful.

Amin

Does that help with like, narrowing and all that too though, like, what did they do?
I'm curious. Like, I don't know if this is the to TMI,

Nicole
It is like physiotherapy, but in your pelvic region so vaginally and anally to help 
with any sort of, like scar tissue.

It's been like helpful in terms of like, like, they'll actually go in and massage and
break down the scar tissue. Wow. So I've I found it helpful as well as with you know,
less pain during intercourse, it has made a difference. Because that you know,
my vaginal canal is shorter and narrower. So yeah. I've found that that has been
helpful.

Amin

Oh, that's so interesting. Yeah, I'd have to talk to my my hormone and sexual
therapy doctor about that for sure. Because I think that that's, I think any having all
any tools to help you really get comfortable with your body again is so important
because I think for me, I don't know about for you, but I felt like after all of this, like
I did not feel connected to that part of my body anymore. I felt like a just a medical
field. And it was just like, this is was just like a medical thing now and I just don't
even want to deal with it. And I think it's the whole thing about when you go into the
medical induced menopause, it just kills your libido. And you're like, I was like, it's dead.
I don't know if it's, it's gone.

Nicole

Well, and I think you're just having such frank discussions. Like, that is a topic of
your cervix, your vagina is a topic of conversation constantly, and it just removes
that it. I think, like it totally medicalize it and makes it you know, it's not sexy
anymore. This thing that has been through the wringer and everybody's seen and
everyone's talking about, yeah.

Amin

Well, hopefully, like, yeah, that's a really, it's an interesting one, I'm gonna 
have to talk to my doctor about that one. I'm like, I'm in that position, where I'm 
like, Hey, I'll take any help, I can get, like, let's get this, let's get the show on the 
road and get this back to back in a good place, get my body back in it in a place 
when I'm feeling happy with it. I think one thing that I've also been struggling with is
just like getting myself in my energy levels back because my energy levels are so 
up and down. And I still get like back pain. And just trying to get myself into a place 
where like, I want to exercise regularly and feel like I can actually start doing more 
high level exercises. I'm scared of doing high impact. I've been doing only low 
impact activities and just trying I think what with being just sick for like, a year and 
not really feeling like I was doing any high level activity. Was it just like hard on 
your body? I just feel like all my muscles are soft. Now. I know that I'm like down 
like it's just slowly got to just increase the amount of walking you do. You got to do 
some restorative yoga, work your way up. And I think that's it's like finding what's 
that healthy balance between pushing yourself but not pushing yourself too hard is 
kind of where I'm trying to is. I'm trying to figure I'm still trying to figure that out. 
And yeah. And that I think when you're in the genre, remission journey, it's that 
take a while to figure out what's what's that? What's that middle ground for you and
and just trying to, it's just trying to read trust, try and get that trust back with your 
body.

Nicole
And it's still changing your body still healing, right. So what, what it eventually is
going to, you know, the new you what that is gonna look like I think it's still early on.
Right. So you may find that those symptoms get better or you know, they they stay.
Yeah, it's just, you know, a lot of things that as you start to recover, you just got to
go through that journey.

Is there anything that we didn't touch that you want to add?

Amin

I don't know.
I don't think so. I feel like we touched on a lot.

Nicole
I think we did. I think this was great. Thank you so much for joining us and for sharing your story. I think it's really important. And I hope it's helpful for you and
your journey. And I know it will be helpful for others who are also going through
their own cancer journey. So thank you so much.

Amin
Thank you so much for having me. I really enjoyed this discussion and for just
sharing the space with me is really wonderful. Thank you.

Outro
Thanks for joining us on the gosh podcast. To learn more about the gynecologic 
cancer initiative and our podcast. Make sure to check out our website at gynecancerinitiative.ca