# IMPERFIX: Jamila Rizvi on Living with a Brain Tumour

An episode of [The Imperfects](https://invisiblenetwork.ai/podcast/1476501557), 3 Apr 2024, 23 min.

Audio: https://enrichment.soundstack.com/4vjqq8/episode.flightcast.com/nejneo0e3sb0e11njt7a97el.mp3

In 2018, writer, author & change advocate Jamila Rizvi was met with horrible news. She was diagnosed with a rare brain tumour and needed surgery. In this episode of The Imperfix we revisit Jamila’s story; the tumour and its varied complications, the surgeries and how Jamila and her husband communicated the news to their son. Jamila is an all round wonderful human being and this is an incredibly moving episode. You can hear the entire chat with Jamila here: https://apple.co/4icJmtx This episode includes a discussion about disordered eating, if you or someone you love is experiencing disordered eating, we recommend the following organisations: • The Butterfly Foundation https://bit.ly/48YCSZe • Eating Disorders Families Australia https://bit.ly/3TLU7J5 • Uncovery https://bit.ly/3x4IOCO The Imperfects is not a licensed mental health service and is not a substitute for professional mental health advice, treatment or assessment. The advice given in this episode is general in nature, but if you’re struggling, please see a healthcare professional, or call lifeline on 13 11 14. See omnystudio.com/listener for privacy information.

## Transcript

[0:00] This episode of The Imperfects mentions disordered eating.
[0:03] If this is something you prefer not to engage with today, then we advise skipping it and coming back another time.
[0:08] My name's Hugh.
[0:09] I'm a co-host on The Imperfects.
[0:11] I'm the son of Sri Lankan and English immigrants, and I call Australia home.
[0:15] We at The Imperfects acknowledge the Wurundjeri people of the Kulin Nation as the traditional owners of the land on which this podcast is recorded, and we extend our respects to the elders past and present.
[0:26] I've spent much of the last decade travelling around this country sharing stories.
[0:29] In doing so, I acknowledge and pay homage to the Aboriginal and Torres Strait Islander peoples' rich history of storytelling.
[0:36] I also acknowledge that whenever I talk about or practice resilience, there is no greater example than the one set by the world's oldest living culture.
[0:45] Hi there.
[0:47] I'm like the imperfect.
[0:49] Oh, yeah, sort of.
[0:49] But I'm a quick fix.
[0:50] Yeah, if you're in a hurry or something.
[0:52] I'm a helpful mix of archival tips from episodes past.
[0:55] You can listen to me fast.
[0:57] Da-da-da-da-da.
[0:58] Get ready for this.
[0:59] Yeah, why not?
[0:59] It won't take long.
[1:00] I'm an episode of the imperfect.
[1:03] It's Ryan here, No Hugh and Josh.
[1:06] And this episode of The Imperfect Fix, we go back and listen to a section from our chat with Jamila Rizvi.
[1:13] So Jamila Rizvi, for those who don't know, is a journalist, author and podcaster and an absolute force of a woman.
[1:21] She's very, very smart and has gone through so, so much, which she so eloquently talks about.
[1:30] with us, with Hugh and Josh, actually.
[1:32] I wasn't actually there the day she was here.
[1:34] But what we'll replay now for The Imperfects is her telling Hugh and Josh about the day she found out that she had a brain tumour and how that absolutely turned her life upside down, how it affected her ability to work, and also just how it affected her ability to live in the same way that she knew how.
[1:57] She talks so beautifully about how they spoke to their son about the brain tumour and
[2:03] And I think if you've got a kid or if kids are in your life and there's any sort of big family trauma or any sort of big issues that you need to talk to them about, I think you'll find this really, really helpful.
[2:14] I know I would if I had kids, particularly in how to speak to them about this stuff that is really respectful and not talking down to them.
[2:23] Yeah, I found it awesome.
[2:25] I loved it.
[2:26] Love Jamila Rispy and I hope you do too.
[2:32] I think the first thing I've got to say, though, is I don't think I've been very resilient.
[2:35] Right.
[2:36] Especially – so I should tell a story.
[2:39] At the end of 2017, I was diagnosed with a really rare kind of brain tumour that affects about one in every 1.3, 1.4 million people.
[2:49] So not a lottery you want to win.
[2:51] Hmm.
[2:54] And I had it removed via surgery through my nose, which is cool, right?
[3:01] It's cool in retrospect.
[3:02] It was not cool at the time.
[3:03] But it was cool.
[3:04] It is cool.
[3:05] Is that one of the surgeries where you need to be awake for that?
[3:08] No.
[3:08] I have not had awake brain surgery.
[3:10] Weirdly though, I reckon I would have preferred that because I'm a control freak.
[3:14] And for me, the hardest part of brain surgery was that I might die and I might not even know.
[3:21] That sounds so stupid.
[3:22] No, I don't mean that.
[3:23] But that's how I felt.
[3:24] I was like, I need to be in control and I'm not going to be in control.
[3:26] That was the hardest thing for me, despite the fact I had an extraordinary surgeon who could do brain surgery better than me.
[3:33] Like, what was I going to do?
[3:34] Be awake and give him some tips and be like, hey, mate, I've got some thoughts.
[3:37] I did really badly in year 10 science.
[3:39] Here's some suggestions.
[3:40] So what do you mean they got it out through your nose?
[3:42] So they went through my – this is a bit gory.
[3:44] I don't mind.
[3:45] All right, this is a gory warning for anyone listening.
[3:47] Sub out now.
[3:48] Come back in a couple of minutes.
[3:51] So I was asleep, obviously, but my husband watched the whole thing on YouTube before I had the surgery, so he knew what was happening.
[3:58] So they basically go through your nose.
[4:00] They use an ENT surgeon as well as a brain surgeon.
[4:02] They cut a little hole in your skull where at the back of your nose it finally meets your skull.
[4:07] They remove the layers of tissue and they stick in not only the instruments to remove the tumour but cameras and then they do the entire surgery watching it on a screen because they can't actually see what they're doing.
[4:20] Well, it's like keyhole brain surgery, basically.
[4:23] Nose hole brain surgery.
[4:24] Yeah, exactly.
[4:24] Yeah, so that was the first one from which I recovered incredibly well.
[4:30] So when did you say that was?
[4:31] Sorry, 2000?
[4:31] January 2018.
[4:32] Okay, yeah.
[4:34] I recovered really well.
[4:36] I was kind of sent away and told, we think...
[4:38] You'll be fine now.
[4:39] There's a bit of tumour that we've left in there because if we'd got it, it would have caused a lot of disabilities, but you should be fine now.
[4:46] Go live your life.
[4:48] 80% chance you'll never have to worry about this again.
[4:51] It had grown back by July.
[4:53] And quite aggressively.
[4:55] So that time in September I had to have a craniotomy, which is where they kind of cut open your head.
[5:01] So I've got a scar that runs, you can see the tip of it, at the top half of my forehead and it runs right around the side down past my right ear.
[5:08] So I had 57 staples.
[5:10] in my head when I woke up.
[5:13] I didn't recover well from that because they had to be more aggressive because the tumour had proved so aggressive.
[5:19] A lot of damage was done to the part of my brain, which is a very densely populated part of the brain, if that makes sense.
[5:25] Like,
[5:26] You can have a brain tumour on the grey matter when not a lot happens and you can cut that out and you pretty much operate quite similarly other than the fact you've had big surgery.
[5:34] Whereas for me to cut brain tumour off the parts of my brain the tumour was stuck to did a lot of damage.
[5:41] So I think recovering from that surgery was a lot harder because it wasn't just recovering, it was adjusting to quite significant disabilities.
[5:49] Then it grew back again.
[5:50] Isn't it a great story?
[5:52] It grew back again and they sent me straight off for radiation treatment at the start of 2019.
[5:58] And so I had radiation to my brain every day through February, March, April and a little bit of May, which was a lot easier than a surgery but was still quite confronting just going to the hospital every day, getting in that machine, putting the mask on.
[6:15] It looked a bit like man in the iron mask except...
[6:18] It looked kind of like Chuck Swipes, but hard on your face.
[6:21] That's what the mask looks like if I can kind of draw a picture.
[6:24] It was a really confronting experience and that did more damage and is continuing to do damage.
[6:30] So the upside of that is since sort of the middle of 2019, I've had no tumour growth.
[6:35] It's only shrunk.
[6:37] And it appears to be, knock on all the wood, dead, according to my surgeons.
[6:42] But the radiation's done further damage.
[6:44] And that's still happening because the radiation's still active in my brain and will be for at least another year.
[6:49] It's still hitting new things.
[6:52] So I find it really hard when someone says to me, are you better now?
[6:56] Because firstly, tumour can always grow back.
[7:01] And even though I think it won't.
[7:04] I'm still kind of struggling through all this chronic illness and disabilities.
[7:08] And so it's hard to say I'm better because I'm not better.
[7:10] I'm never going to be better.
[7:11] I'm a completely different human being.
[7:14] And, you know, if it wasn't for science –
[7:19] my body shouldn't be alive.
[7:21] Like my body isn't alive without the pills and the drugs that I take every day.
[7:25] And so, yeah, it's hard to describe yourself as all right.
[7:29] Yeah.
[7:29] So that is my very sordid story.
[7:31] What, so, so what are you adjusting to?
[7:33] You said it's more about adjust.
[7:34] One of the big parts is adjusting.
[7:35] What are you adjusting?
[7:36] What are the things that are different for you now?
[7:37] If you don't mind me asking that.
[7:39] I won't go through them all because it's a very, very long, boring list.
[7:41] Yeah, okay, okay.
[7:42] But the three I find hardest day-to-day to manage, the first one is that my body doesn't produce cortisol anymore.
[7:50] Right.
[7:51] And cortisol is your stress hormone, which people generally talk about wanting to minimise, right?
[7:55] Right.
[7:56] But you need cortisol.
[7:57] It's there for a reason.
[7:58] When you have a really stressful adrenal event where, you know, perhaps you go to a funeral or you run a marathon or you are in a car accident, your adrenaline will get you through that period and then your cortisol will increase to meet the adrenaline and bring you down slowly and sort of smooth it out for your body.
[8:15] I take synthetic cortisol, so I take a tablet.
[8:19] So if I don't take enough to meet what my body is going to go through that day, I go into what's called an adrenal crisis in that my adrenaline goes up and then instead of being brought down smoothly with the cortisol, it just crashes.
[8:32] And that usually brings my blood pressure down to about 60 on 40 and you've got about...
[8:38] 36 hours before you die.
[8:39] So you've got to get to hospital very fast and it's an experience.
[8:44] And I've had that happen about three times since my radiation.
[8:49] I think I'm getting better at it.
[8:51] I'm getting better at managing it.
[8:52] I think it will happen less and less as I get more used to it.
[8:55] So that's kind of one of the big ones.
[8:59] Another one of the big ones is pain.
[9:02] Like I take synthetic growth hormone and a couple of other drugs that just are really painful.
[9:08] Kind of feels like – did you have growing pains when you were a teenager?
[9:11] In my knees I did, yeah.
[9:12] Yeah.
[9:13] It's like having that all over your body.
[9:14] So I feel it in my fingers, in my ankles, and I'm someone who used to be a really fit, active person and it's very hard to be that now because I'm in a lot of pain a lot of the time.
[9:25] And then the third one which –
[9:27] I'm kind of embarrassed to admit is the thing I find hardest because I'm someone who believes in body positivity and I don't like the pressures that are put on women to look a certain way.
[9:37] But I have a condition called hypothalamic obesity, which basically means the hypothalamus, which is an important part of your brain, has been impacted so that my body doesn't, my hunger doesn't work properly.
[9:49] My hunger signals don't work properly.
[9:51] I don't metabolize
[9:56] which means I'm about 20 kilos bigger than I used to be and there's not much I can do about it.
[10:02] In fact, it's taking a lot to keep me about the size that I am now.
[10:07] Most people gain about 80 kilos when they develop this condition, which is a lot.
[10:13] And so I'm in a weird position where my doctors are celebrating because they're like, 20 kilos is great.
[10:19] And I'm like...
[10:20] 20 kilos is a disaster.
[10:22] And the problem is I think I am someone who's always been very good at talking about body positivity.
[10:29] I'd always felt kind of okay towards my body.
[10:32] I didn't love it, but I didn't hate it.
[10:33] I had a pretty healthy relationship with it.
[10:35] I moved my body a lot.
[10:37] I ate well and enjoyed food when I wanted to.
[10:40] And now I think I have...
[10:43] I think my dieticians and my psychologists try not to put words on it, but I think I've developed a pretty severe eating disorder as a result because it's hard to have no control, or at least it feels like I have no control, when you are someone who likes to be in control.
[11:00] Yeah, totally.
[11:00] Well, with your – when you say hunger, like there are no hunger signals, what is it so you just don't know?
[11:07] I'm always hungry.
[11:08] Oh, right.
[11:08] Okay.
[11:08] Yeah, like we could sit down and have a three-course meal and I'll be hungry within about half an hour.
[11:13] Right.
[11:13] Okay.
[11:14] Yeah, gosh.
[11:15] So what does this do to your – thanks for sharing that because that's a –
[11:19] I have so many questions off that.
[11:20] So you have a five-year-old, is that right?
[11:22] Yeah, he would want you to know he is almost six.
[11:25] He is now saying five and five-sixths to people just so they know.
[11:29] It's really close.
[11:32] So a birthday and two months then, is that right?
[11:34] Yeah.
[11:34] Yeah, okay.
[11:36] And what's his name?
[11:37] His name's Raffi.
[11:38] Raffi, okay.
[11:40] So I can't help but think about this just having a son of a similar age.
[11:46] So do you explain all this to him?
[11:48] Yeah.
[11:49] And how hard is that?
[11:50] Not...
[11:51] Not in the language or the depth.
[11:53] I've just explained it to you because he wouldn't understand.
[11:56] But he needs to know why mum's going to hospital.
[11:58] Yeah.
[11:58] We have talked about it to him differently the whole way through.
[12:02] One of the first things we did when I got sick was my husband went and saw a child psychologist and just got some tips, I suppose, to talking to a then almost three-year-old about what was going on.
[12:18] And at two and a half, three...
[12:20] You don't have a lot of understanding.
[12:23] But we were given some really excellent advice.
[12:26] The thing that has stuck with me that I always tell people who are unwell, who have young kids, is don't just say I'm a bit sick or mummy's a bit sick because then the next time that kid has tonsillitis, they think they're going to die or need an operation in their brain.
[12:41] You need to give it a name.
[12:42] And even though it feels weird talking about tumours or cancers to a little person, it's just a word.
[12:49] And it's a word that, especially for a little person, can help them because they know they don't have that and they're not going to get that and they can't catch that.
[12:58] And it helps you distinguish between ordinary sick and really sick.
[13:03] Another thing that we did is we bought him a truly magnificent over-the-top doctor's kit toy.
[13:11] which really empowered him when he was little, made him feel powerful.
[13:14] He used to put on like a white coat and his name badge and carry this doctor's kit to the hospital to visit me and he would feel like he could do something and we really taught him to do things.
[13:24] And as he got older, he got taught to do different things.
[13:28] Like here's what you can do to help mummy.
[13:31] And I think he has mostly handled it incredibly well and he is –
[13:37] I'm not saying it's good to have a mum with a brain tumour.
[13:40] Avoid it if you can.
[13:43] He's more empathetic than I think most kids his age are.
[13:47] He has a deep level of empathy and understanding for other people's pain because he sees it all the time.
[13:53] You know, he knows that it's not unusual for me to say, mum can't get out of bed right now, it hurts too much, and he has to get all these Transformers and sit on the bed and play on the bed because I can't get up.
[14:03] And he knows what music's going to cheer me up.
[14:06] He knows how to get a heat pack.
[14:07] He knows where my medicine's kept.
[14:09] He knows...
[14:11] all this kind of stuff that most kids don't.
[14:13] You know, he always comes and sings songs at me when I have to give myself needles at night time.
[14:18] He's a kid with a lot of empathy and most five-year-olds, I don't think, well, most five-year-olds unexpected to have that and I would never have expected him to have that otherwise.
[14:28] So I think there are benefits.
[14:30] You know, I think you can try too hard to look for silver linings.
[14:36] You know, and would I take all of this back?
[14:37] Yeah, I would.
[14:38] I'd take it back in a second.
[14:39] I would have my life back in a second.
[14:41] But that doesn't mean there haven't been some good things that came out of it.
[14:45] And I think for him so far there are some real positives.
[14:50] Well, I'm very interested.
[14:51] I know it sounds like a bit of an obvious question for this podcast, but I'm very interested to hear about your mental health off the back of everything that you have been through, continue to go through.
[15:00] How's your mental health or how has it been throughout the journey?
[15:05] Mixed.
[15:06] Mixed is the best answer.
[15:09] The most intense period of life.
[15:12] Mental illness, I think, was between finding out and the first surgery for me.
[15:17] It was very – I had a short but very intense period of being extremely unwell.
[15:22] And I don't necessarily have words for the kind of illness.
[15:26] I suppose it was an extreme anxiety reaction.
[15:29] But I was definitely dissociating for parts of it.
[15:33] I became –
[15:35] completely convinced I was going to die in the surgery and not like I might die, but obsessed with it.
[15:43] I think my very organised prepare for anything brain went, okay, say there's a hundred versions of this outcome.
[15:52] I can deal with, I can think my way through how I will deal with 98 of them.
[15:57] And there's two of them I can't deal with.
[16:00] and they are dying.
[16:01] And so I just focused on them because it was almost like my brain thought I could find a solution to them.
[16:08] And I really honestly couldn't think of anything else and not,
[16:14] not for moments of my day, not for parts of my day, all of my days.
[16:18] Like I couldn't think about anything else and I was in an awful way and to the point that I spoke to Jez about it afterwards, my husband, and he said his biggest fear with me going into the surgery was that I would still be in that mental place when I woke up, not that something bad would happen in the surgery.
[16:37] He was much more scared about my mental health than my physical health.
[16:40] Yeah.
[16:41] So could people tell?
[16:44] Like, I mean, obviously your husband probably could, but was this something you were good at hiding?
[16:50] I think partly I was good at hiding, partly.
[16:56] Further away from it, I think I was good at – I had days where I was good at hiding it.
[17:00] Like there were days I was able to go to work and I was able to function.
[17:02] I was hosting ABC Radio.
[17:05] in the few weeks leading up to the surgery and I think I did pretty well at just getting on air and doing the job but I remember one day I was on air and I interviewed Yelena Dokic, tennis player, and I was tennis obsessed as a teenager and I adored her and so it was a real thrill to interview her and then I saw her a few hours later in the corridor and I was like, oh my god, it's Yelena Dokic.
[17:28] And I went over and introduced myself.
[17:29] I was like, I'm such a fan.
[17:31] And she just looked at me.
[17:32] She's so Eastern European.
[17:34] She was like, we have met two hours ago.
[17:36] Like, what's wrong with you?
[17:39] But I honestly just didn't know.
[17:41] Like, I think I was, I would go on air for three hours doing national radio.
[17:44] And I didn't really know what I said.
[17:47] I just sort of did the job in autopilot because I couldn't.
[17:52] Like I recorded goodbye messages to my son and to my husband.
[17:55] Like I went the full, I was there.
[17:58] I was expecting to die.
[18:00] Like I was saying goodbye to people.
[18:03] That was the worst of it.
[18:05] I think since then...
[18:07] I think it's got something to do with my control freak nature.
[18:10] But I was a lot more confident about the second surgery because I felt like, oh, well, I've done brain surgery before, despite the fact that the second surgery was way more dangerous, way more involved, completely different surgery.
[18:20] But I was more confident because I felt like I knew the process.
[18:23] I knew how to go into hospital.
[18:24] I knew what to do.
[18:25] Other than that, the only time I've ever been to hospital was to have a baby.
[18:30] And so I felt more comfortable.
[18:31] I knew the nurses.
[18:32] I knew the team.
[18:32] I knew my...
[18:34] surgeon I knew how good he was I I was a lot calmer about it I was still really worried but I don't think my mental health was at risk what was your mental health like before before all this happened would you say is this I mean is the experience of feeling like you've an eating disorder and and that obsession you had is this a whole new experience to you
[18:57] I would say, yes, it's a wholly new experience, but I definitely had some mental health flare-ups, I think would be a better way to put it, in the past.
[19:05] It wasn't an ongoing challenge of mine, but I had a year at work where I had really severe anxiety and I had a period of sort of a death foreboding type experience just after I got engaged, weirdly, which is when you're supposed to be happy, and I wasn't.
[19:25] Poor Jez was freaking out.
[19:26] He's like, what did I do?
[19:27] What did I do?
[19:32] But I'd never like this, I suppose.
[19:35] But, yeah, I certainly had, you know, I had a psychologist to go to when I got sick.
[19:40] So I had someone I had a relationship with already who knew me, who knew my experiences, who I didn't see super regularly, but who I had seen regularly in the past and I had someone to call.
[19:50] And I think that was really helpful that I had someone who knew me before I was sick, who was able to sort of know what my equilibrium was and,
[19:58] Whereas I think if I'd walked into the office of someone for the first time when I got sick and said, I'm not well and my mental health suffering, they wouldn't have known what I was like pre-brain tumour diagnosis.
[20:09] Yeah.
[20:11] And the other thing is that I experienced a really, really severe fear of flying in the six months before my tumour was diagnosed, which has disappeared.
[20:22] Yeah.
[20:23] Since the surgery.
[20:24] Really?
[20:25] So, yeah, they believe that the tumour must have been pressing on hormones in a way that fuelled an anxiety that for me manifested as a fear of flying despite being at the time a platinum frequent flyer in both airlines.
[20:36] Like I flew a lot and I developed a fear of flying, an obsessive fear of flying, and since the surgery it's just gone.
[20:45] Wow.
[20:45] Gosh.
[20:46] That's fascinating.
[20:46] Isn't it?
[20:47] So the brains are, I don't know, for me that I think we all know
[20:53] intelligent people who care, know that mental health is not something of your own making, that mental illness is something that is chemical and is caused by what's going on in your brain, the same way physical ill health causes illness.
[21:08] problems in the brain, but we still value them differently.
[21:12] And some of my dearest friends who are really practised in the science and the psychology of mental health and who understand that mental health is underfunded and under-recognised and undervalued as something that is really debilitating for people, even them said things like, when I first got sick, would make comments like, yeah, but you've got a real, like you've got a brain tumour.
[21:40] Like I said earlier, I would have the surgeries and the recovery over again 10 times to avoid that period of mental ill health that came before it.
[21:48] And that period of mental ill health was all about this obsession with possible death that in all likelihood was not going to happen.
[21:57] So it was something in my mind...
[22:02] And that experience was worse.
[22:04] That experience was worse.
[22:05] And it was worse than the pain I experience now.
[22:08] It was worse than all the recovery.
[22:10] It was worse than all those periods in hospital learning how to stand up again and how to walk again and constant vomiting.
[22:17] It was worse than the period I had where my brain was
[22:21] didn't know how to be satiated by water.
[22:25] So I felt like I'd been in the desert for 10 days without water and I was crying because I was so thirsty, even though I was perfectly hydrated.
[22:33] It was worse than all of that.
[22:36] And yet we still treat mental health like it's just kind of in your head and you should get over yourself.
[22:43] I think it's harder.
[22:45] In my experience, it has been harder.
[22:47] Gosh, that's really fascinating.
[22:51] The Imperfects is not a licensed mental health service and is not a substitute for professional mental health advice, treatment or assessment.
[22:58] The advice given in this episode is general in nature, but if you're struggling, please see a healthcare professional or call Lifeline on 13 11 14.

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