We are more than doctors and nurses and paramedics and patients. We are the sum of the stories we tell. Stories that have a beginning, a messy middle and, one day, an ending.
In this series, we want to remind you that we are all ONLY HUMAN.
You can read the transcript from this conversation HERE.
Becky Platt: 0:00 Welcome to Only Human, a podcast from Don’t Forget the Bubbles. This is Becky Platt with Henry Goldstein, and these are the stories that reflect the diversity of our community and the multitude of life events that come our way that shape us as professionals, and as humans. Emily’s a PEM Consultant working in London. Her story is about her experience of having a brain tumour and what it was like to be a patient as a medical professional. I’m struck by Emily’s use of humour as a coping mechanism. And I think this is something we do a lot as healthcare professionals. I have to say though, despite the humour, I had a lump in my throat for much of our conversation.
Emily: 0:43 It’s tricky to know where it all began. Because like lots of things you don’t really know it has begun, until you’re in the midst of it. It all kicked off at summer ’15. When I thought life was sorted, life was good, and I was in a lovely training job that I loved. I was about to move, and to start, actually my PEM grid training in another city. And I was in the process of actually applying to volunteer at their mountain rescue team. And the first thing you have to do is fill in a health questionnaire. And I nonchalantly tick this box, ‘I am completely healthy, I have no medical conditions to declare’. And I got past that first stage. And then one morning when I was meant to be on a late shift, I wake up and find my flat completely covered in blood, with no recollection of how that happened, and no idea. And I was living on my own. And I still don’t entirely know what did happen. But I sort of look around my flat and thought, ‘I probably shouldn’t go into work today’. And just nonchalantly phoned department and said ‘I think I’ve had massive haematemesis. Probably I’m not going to make the late shift’. And then about four hours elapsed, and I woke up again and thought now I’ve still had a haematemesis. Still probably shouldn’t make the late shift, probably should get myself to A+E. But it was this really weird disconnect of my clinical brain saying ‘yeah, this is definitely coffee ground vomit’. But not taking that next step of ‘I need to do something about it’. And I think that slightly summarises the whole thing of in retrospect, now there were three days of a slight morning headache, but so slight, I’m not even taking paracetamol. Yeah there were a couple of days when I was feeling sick. And in retrospect, maybe a couple of colleagues were joking about morning sickness, but you normalise things. And I think when you think you’re young and healthy, and you are young, and you think you’re healthy, you do normalise things. Which I think makes things really difficult for doctors who are then treating other healthcare professionals, because they assume that you know things. And I do know things I do know that a morning headache and nausea, and losing two hours from either a seizure or a head injury, which is where we think the blood came from…they think that I know what that means. But it took about six weeks of slightly going around the houses and navigating a rather clunky system to get to a point of getting a diagnosis. And I think that’s one thing that was really clear to me, that navigating that system, even when you work in the system, the NHS is so big and if you’re previously healthy, it’s all still quite alien even someone working there. I got a head CT scan, because I thought I had a head injury. But that was requested by my GP so the results came back to my GP. So even though the radiologist said we found something you need an MRI, still goes back through the GP who then has to refer you to Neuro which is all the time and and delays, delays delays…
Becky Platt: 4:12 Emily was able to ask for the treatment she felt she needed. But it was still a slow and frustrating process, navigating the red tape of the NHS.
Emily: 4:23 Now I was fairly good at stamping my feet. I think it’s an ED skill, isn’t it? There’s a problem this needs fixing. I need someone to fix it. But it still took about six weeks. And having to fight when you’re not feeling well, is hard. But eventually got in under a fabulous team who as I said I think they thought I knew what was going on. And I kept telling them that I had quite a significant family history of space occupying lesions. So I think they thought ‘she knows what this is’. And they said well, we’ll admit you to the to the ward and….You’ve had your CT, to rule out a sagittal sinus thrombosis. So we’ll get you an MRI tomorrow morning. And I got up to the ward and told my mom to go home at two in the morning. And the ward sister said, ‘Oh, can you just fill in this form with your next of kin details’ and handed me an admission? She’s my details at the top. Reason for admission.Number one: ? sagittal sinus thrombosis. I thought, well, that’s fine. We’ve ruled that out. Yeah. Number two, ? space-occupying lesion. And I saw that I thought, no, I hadn’t realised that.
Becky Platt: 5:37 There had been a level of assumption about Emily’s knowledge of what was happening to her. But at that time, she was a patient, not a doctor. And that led to her finding out her potential diagnosis in a really difficult way.
Emily: 5:52 I felt really silly. Because I thought they clearly assume that I’ve already worked this out. And maybe I should have worked this out. But I had that fallback of saying it’s okay, I’m a paediatrician, and actually I’m not a paediatric patient. And I felt very silly. But within the slight days, I thought it’s two o’clock in the morning, there is nothing I can do about this. Worrying about this is not…is this going to affect my management? No, therefore, I’m not gonna worry about this. They’re gonna MRI me tomorrow, and then they’ll tell me and I can deal with it, then.
Becky Platt: 6:25 How very ED of you.
Emily: 6:27 Very ED. It runs through, right. And so just parked it until the next day.
Becky Platt: 6:34 So there was no kind of visceral reaction of God. What does this mean to me?
Emily: 6:41 No, really, I think I’m very simplistic. And the slightly complicating factor was, my dad had been treated in the same hospital for a very aggressive brain tumour. And so my non medical family, their reading of that particular hospital and brain tumour always ends badly, n=1. And the consultant who gave me that news says, I can come back when your family come back and go through things if you’d like. And the trouble is, I’m pretty worried about this and explained my dad’s background. And I said, my sister’s 38 weeks pregnant. And he said, ‘Right, well just break the news gently to them, because you’re the nearest we get to obstetric cover in this hospital. So if she goes into labour you’re resuscitating that baby’. I thought, that’s okay. I know how to resuscitate a baby, maybe I can do that. Talking about an adult diagnosis of a brain tumour that’s a bit harder.
Becky Platt: 7:44 It sounds like at a time when you really needed to be treated like a patient. You were being treated like a colleague.
Emily: 7:50 Yes. Yeah. And sometimes that’s nice. And I think a recognition that you’re a colleague is really vital. But also recognition that this was completely outside your scope. And even if it was completely your actual scope, you know, if I’d been an adult neurologist, at that point, I’m still a patient. And surgeons always get bad press of not seeing the whole person, but the person who pitched this perfectly was the neurosurgeon who clearly had his own script. And he followed his script, he did exactly what he always does. But started it with ‘Now I know some of this is very familiar to it to you, but some of it will be completely unfamiliar. So let’s go back to basics’ so he he made that acknowledgement, and then treated me like a patient. And he was spot on.
Becky Platt: 8:42 Good. And did he help you to make sense of what was happening?
Emily: 8:46 Yes, because again, I think he had, in some ways, quite a ED one step at a time. And he said, I can tell you what I think this looks like on a scan. But that isn’t nearly as useful as we’re going to resect this. You’re fit for surgery, we’re not going to second guess we’re not going to do a biopsy, we can take as much of it out, and then we’ll get histology. Once we’ve got histology, then we’ll deal with the next steps. I thought that’s fine. This is bite size. We’ll deal with one issue, and then we’ll move on to the other. And actually that approach, whether that’s his normal approach, or whether he just thought I think that’s what’s gonna work for Emily. But it did.
Becky Platt: 9:25 Now that she was under the care of an understanding neurosurgeon, Emily now found herself facing the prospect of brain surgery, and the inevitable anxiety and readjustment that came with that.
Emily: 9:37 That’s not remotely what I was expecting to be doing at that stage. And I think that I felt really difficult. It was just at job switchover. And I thought I was meant to be doing something else, I’m now having to readjust. And I found that almost sort of fear of missing out probably actually harder and occupies more thinking space, because I think I had so much confidence. Rightly, in all of that team, I thought you know what you’re doing, I’ve got the easy gig, all I need to do is turn up on time and stay asleep. And in fact, I’m not even in charge of sleeping, someone else is doing it for me. All I need to turn do is turn up. You’ve both been doing this for however long. I know how rigorous your training is, your revalidation. I know I’m in safe hands, which I think I found really comforting. The woman who was second after me on the list wasn’t at all in the medical world. And she was absolutely terrified. And I did do a bit of going into patient into doctor mode. And I said turn he’s been doing this for this number of years, he has to do this number of operations a year. He is at his peak, and he has been practising for the last 30 years. So he’s at the top of his game for you and I tomorrow. And after
Becky Platt: 10:58 I love the fact that you were still being a doctor even then,
Emily: 11:02 That was in MRI the night before in a patient gown. It is a little bit ludicrous. And I think I, in retrospect that was a bit steroidal. But in some ways, I think slightly hanging on to that being a doctor, you’re distressed. I think I can say something that’s going to make you feel better, in itself made me a bit better feel a bit better. It’s all a bit ridiculous.
Becky Platt: 11:24 It does sound a bit surreal. Maybe. I mean, maybe there was a touch of avoidance in there, Emily.
Emily: 11:32 There’s scope that I was completely skirting the issue. And there was scope, that I’m still slightly skirting, but, bite sized bits.
Becky Platt: 11:45 Despite the imminent operation, Emily was still able to use the opportunity as a professional learning experience on the way to theatre, courtesy of a wonderful ward sister.
Emily: 11:58 She was brilliant. And in my mind, that’s what all ward sisters are like or if they’re not they should be like. There was a nursing student on the ward that day, Friday morning. And she also told me she was going to be there the whole weekend. So I’m like, ‘You’re my point of continuity, this is nice’. And she said, I’m coming with you to theatre. So great. And the ward sister said ‘No – have you asked permission? Well done for seizing that learning opportunity. I’m recognising that for you it’s a learning opportunity. But for Emily and all of your other patients, it’s a key moment in their life. And you are only there with permission’. I thought actually well done you for supporting her learning, but also getting her to see it. Like, I don’t know how many times she’s been to theatre since. But that’s the one time I’ve been to theatre as a patient. And I think that recognition that there are things that you and I do every day. Yeah, putting back pulled elbows or something. Yeah, I mean, how many times have we done that we’ve lost count, but probably for that child and that parent is the one time that ever happens. And I think her really underlining that to his student made quite an impression on me. And I thought I’m going to try and store that up, for my students as well.
Becky Platt: 13:23 I love that. I do think that’s one of the things that’s the best things about our jobs that we are there at those key moments that change whole lives. You know, and that’s a privilege, isn’t it? When she woke up after surgery, Emily definitely felt more like a patient than a medical professional in a rather surprising and unusual way.
Emily: 13:48 I was really glad that I had woken up. Because signing one of those consent forms is not that fun. So I thought, well, this is this is good. Firstly, I’ve woken up ‘tick’ and I can see the recovery nurse. That’s the second tick. And then the surgeon came to see me and I thinking in retrospect he was obviously a little bit more anxious operating on a colleague. And he came to see me and he said, ‘Oh, I thought I’d phone your Mum, can I have her phone number?’ And I said, ‘Oh, it’s fine. It’s all on the consent form. I filled it in yesterday’. And he said, ”No, I’d like her number’. So having just come out of a GA, I had to remember my mom’s mobile number. And she didn’t answer because she was desperately pretending that she was really relaxed and chilled out about this whole thing. See that whole avoidance thing runs in the family. So she had taken her twin sister to meet my brand new nephew, so my mother’s grandchild, and they were pretending to be doing happy families with this new baby. So she didn’t answer her mobile. So he assumed I’d got the number wrong. And he came back and he said, so of course I thought, I’ve got my numbers wrong. I’m losing the plot. Yeah, no, in fact, it was that she had her phone on silent. And, and then actually a friend of mine, who’s a surgeon, but in a very different speciality was operating in the next theatre. And so he came to see me and recovered. Yeah. Which is obviously a plus point being member of stuff. You do get your next door neighbour from medical school coming see you half an hour later in recovery, which, again, just slightly rounds things. Because someone who you’ve known that long will slightly take the mick out of what you look like, in a nice but slightly gentle way.
Becky Platt: 15:33 And what did you look like? You’ve clearly got a lot of hair.
Emily: 15:37 I’ve got quite a lot of hair, and I had what all of my family called a Basil dressing like Basil Fawlty when he has some head injury and he has this massive bandage around his head. And I had two pigtails. I had very, very long hair at the time, and I tied it back. And I’d been warned that I wouldn’t be able to wash my hair for two weeks until they took out sutures and staples. And I thought ‘it’s middle of summer,and I’m covered in iodine, probably a bit of blood, let’s be honest, and you’re telling me I can’t wash my hair. This is gonna be grim’. But I’d woken up with two French plaits. Now I can’t French plait, and I had fallen asleep with no French plaits. Someone had plaited my hair and got it out of the way for two weeks. And I assumed, that it’s probably sexist that I assumed that one of the theatre team had done it. And I thought isn’t that nice? And it made life a lot easier. And it meant that I didn’t feel totally grim for two weeks. And I went back in after two weeks, got given my histology results, and had my staples taken out by my amazing clinical nurse specialist who has saved the day on so many occasions. And I said look, can you have look through the notes and try and work out who might plan my hair? And can you tell them that actually that is proportionately made more difference to my life. Obviously the surgery was a bonus, but the French plaiting has actually humanised the whole thing. So if you can work out from the notes who it might have been, can you thank them and tell them to keep doing it because it really helps. And she said, I mean, I can tell you exactly who that was. That was your surgeon. He always does that for female patients with a lot of hair. He knows it matters.
Becky Platt: 17:21 Oh, wow.
Emily: 17:22 I just thought you always lovely as I thought you were. You were a very sweet person. I knew you’re a good surgeon. Now I know you’re a good person.
Becky Platt: 17:30 That’s amazing. Because that as you say that just humanised the whole thing.
Emily: 17:37 You’re not just a hospital number, or the first case on the list. You’re a person with a lot of hair.
Becky Platt: 17:42 Oh I’m making you cry, I’m sorry. Emily has recovered really well from her surgery. And this unique experience has given her the opportunity to reflect on her own career.
Emily: 17:56 Medically I’m well. And I feel incredibly lucky. And I think actually doing the job I was doing, probably meant I picked things up a little bit quicker than if I had been working in office. And, and having time away from work and thinking that I potentially might not get back to it, is a very good way of focusing your mind and make you think yes, this is what I want to do. And I can honestly say I bounce into work every single day. Because how jammy am I? I get to do what I want to do, and I’m able to do it and that feels really lucky. And I don’t always bounce out of work the day but hey, I am only human. I’m still on to follow up, both with the oncology team and then some endocrine and ophthalmology stuff dealing with side effects. I’ve been promoted from three month follow up to six month follow up and I think, fingers crossed, later this week. I might even be moved to yearly follow up, which does mean fewer scans and fewer trips to hospital and all is good.
Becky Platt: 19:06 Emily, thank you so much. As somebody who spent several months working with you, I can absolutely attest to the fact that you bounced into work every day. Thank you. Thanks for listening. You can find more episodes of Only Human as well as details of events, courses and other resources at DontForgetTheBubbles.com Until next time…