Denise Lewis: From vivid dreams to brain surgery

In this episode of Invisible Me, Denise Lewis shares her journey with brain surgery.

After experiencing subtle symptoms like headaches and vivid dreams, Denise went on to develop auras and fainting spells. After passing out while driving, she was finally diagnosed with epilepsy, while a routine scan revealed a brain tumour, leading to surgery and the road to recovery. 

Denise chats with Pat about the physical and emotional challenges she faced. She also touches on the impact her condition had on her family and the importance of communication and support. Having also had a recent diagnosis of fibromyalgia, Denise discusses her path to acceptance and learning to live with the impact of her condition.

Intro music by Ben Blanchard. 

Edited by Tom Haigh.

Transcript

PAT PORTER:
Welcome to Invisible Me - a podcast centred around invisible health issues and the feeling of not being seen and heard. Yet here I am standing right in front of you. Does this sound familiar? Well come join the conversation, share your experiences. Let's break down those norms and attitudes for the better. This is a safe space to chat with me, Pat. Welcome Denise. Thank you for joining us this afternoon. It's a pleasure to have you here and talk about a very big subject that we don't hear about very often. Welcome, Denise.

DENISE LEWIS:
Hi Pat.

PAT PORTER:
Hello there. Can you tell folks listening in about, I'm going to say it, brain surgery.

DENISE LEWIS:
I can.

PAT PORTER:
Could you tell us how it all started? Literally, how does one know that something's wrong?

DENISE LEWIS:
Well, I think sometimes it's very difficult to know things are wrong, and I think sometimes your GP doesn't always realise that something's wrong because there's lots of symptoms that can relate to many things. And I think this is where initially I had the problem because in around late 2014, I started to suffer quite badly from severe headaches, very, very vivid dreams and just pain in my neck. And this continued for some time. And as it continued, I thought, well, I probably need to see the GP now.

PAT PORTER:
Did you think it was migraines or something else that was happening?

DENISE LEWIS:
Yeah, possibly. I wasn't really sure. The only reason I thought it might be something different was because I'd worked with people with epilepsy in the past and I was experiencing what I would call an aura. So I would, initially I'd start with strange sensations in my tummy, which felt like they were moving upwards. That's the only way I can describe it really. And then I'd start to get peculiar smells, visual instances, and felt very sort of out of it and faint.

PAT PORTER:
Wow. Can I ask, when you say smells, was it like bad odours or was this normal orders but they were enhanced or..?

DENISE LEWIS:
Yeah, it's strange, really. I worked in a school and my sort of visuals and smells, et cetera, were of the lab in school and I would get quite chemicals.

PAT PORTER:
Chemicals, yes,

DENISE LEWIS:
Chemical smells and tastes. So I think in my heart of hearts, I thought this is epilepsy, but I didn't actually pass out. I just went very faint and I'd have to sit down or put my head down in order to wait until it passed. But that continued to get worse, which is when it concerned me more and I went to my GP.

PAT PORTER:
Sure. How often was this? Once a day, a couple of times a week, or you couldn't really put a number on it?

DENISE LEWIS:
Oh, no. It was quite often, really, perhaps every other day.

PAT PORTER:
You did well to last that long. I'd have been going to the doctor the very next day!

DENISE LEWIS:
Oh, no. Well, you see, I try not to, I think because I've been such a fit and healthy person in the past, I did lots of running, lots of going to the gym and sport. I just thought, well, I was at that age where we are on the change, et cetera.

PAT PORTER:
Yes, people will say it's the menopause or it's migraines, or you're just tired. So we always justify something until then we give in and go to the doctor.

DENISE LEWIS:
Until we find out different, yeah. So I then went to the GP who, as you say, put it down to I'd had a thyroid problem. He thought it might be the thyroid or he thought it might be the change, but there was no sort of suggestion that it was anything serious. So we sort of monitored it for a while. And then I think it was Easter 2015, I went down to Plymouth to see my sister and I was driving, and I just remember saying to Paul, because nobody had asked me not to drive. So I remember saying to Paul, oh, I feel weird. I think I've got one of those funny things coming on. And he said, are you going to be all right? And I said, well, yeah, because I'd never, I just felt strange, but I mean, at the time I was on a dual carriageway and I wasn't quite sure where to go. And then apparently I just passed out at the wheel.

PAT PORTER:
Oh my goodness.

DENISE LEWIS:
And Paul managed to get me across onto the hard shoulder part of the dual carriageway. And obviously once it had passed, I mean, he wasn't sure whether I was having a stroke, but he noticed that my face was not right, et cetera. So he managed to get me into the passenger side of the car, and then he drove the rest of the way to my sister's. Didn't it even occur to me to phone an ambulance or whatever, because usually they passed and then I'd have to sleep because it left me very fatigued. So when I got there, I just basically went to bed for a few hours and then I was fine.

PAT PORTER:
You're fine. You're a phenomenal person. Honestly, I would've been ringing everybody. And Paul you're very calm and collected couple. That's impressive. Most of us would just went into panic mode.

DENISE LEWIS:
Yeah, no, I didn't really

PAT PORTER:
Scary for him as well to observe that.

DENISE LEWIS:
Oh, very. Very scary.

PAT PORTER:
Very scary. But my heart was out to both of you.

DENISE LEWIS:
So obviously following that, I then went back to the GP and said, look, this has happened. And that's kind of when they started treating it a bit more seriously. And obviously I was told then I would have to stop driving until they'd got to the bottom of things. So I had a variety of cardio investigations, et cetera. And I think I'd had, then I had sort of more episodes where I'd actually pass out as well. And then eventually I did tell my doctor what I felt, that it was some form of epilepsy.

PAT PORTER:
Because cardio, it's all about the heart, isn't it?

DENISE LEWIS:
Yes, it is.

PAT PORTER:
And they're not looking at the brain at this point. You said visuals as well as smells, and they're still looking for the less obvious, they were looking at the heart and other things.

DENISE LEWIS:
Despite the fact that I felt in myself it was epilepsy. But then they did, when they found there was no problems with the heart and things, then they sent me to see the consultant for epilepsy, and he diagnosed it as temporal lobe epilepsy initially, but it actually is gastric aura epilepsy. So it's where you get this, there is such thing where you get this funny feeling in your tummy. You then start to have an aura, which for me was in the lab and at school,

PAT PORTER:
But very vivid visuals.

DENISE LEWIS:
Very vivid. It was really strange. So he did diagnose me, and that was in about the August of 2015. And then from there he said, what we do is as a standard thing, sometimes with epilepsy, they can actually see by looking at the brain, they can look at patterns within the brain that can actually say, yes, it definitely is epilepsy, or that's what they told me anyway, Pat!

PAT PORTER:
Yes! You were in their hands. You just have to go with the flow. But the least though, we're looking now at the brain, epilepsy is very connected to brain activity. So they were in the right area, but it's almost a year, 2014, 2015. That's pretty slow to get...

DENISE LEWIS:
A long time.

PAT PORTER:
...even starting investigating.

DENISE LEWIS:
Yeah.

PAT PORTER:
Were you on medication? Did they give you medication at this point?

DENISE LEWIS:
No, no medication at that point until they'd done the scan, et cetera. So I went for the scan. Paul and I had planned to go out for tea, so I just thought it was going to be a routine scan and blah, blah. But when I went and had my scan, they asked me, well, it was strange because they did a scan and then they put contrast dye in. Now at that time, I didn't realise they put contrast eye in because they can see more. Yes. So if I'd known that, then I probably would've realised that there was something that they weren't quite clear about.

PAT PORTER:
And they're really looking for more detail.

DENISE LEWIS:
Yes. Yeah.

PAT PORTER:
I'm glad they did though.

DENISE LEWIS:
Yeah!

PAT PORTER:
Yes.

DENISE LEWIS:
I had the scan done and then they asked me to wait and see the doctor, and I think I sensed then that something wasn't quite right. So I said, well, my husband's just outside. I'd like him to come in. So Paul came in and that's when they delivered the bad news that there was a tumour. And they were quite concerned because the pressure in my brain was quite raised.

PAT PORTER:
Goodness.

DENISE LEWIS:
Which is possibly, I think because the tumour had got to such a size, it was pressing on things, et cetera.

PAT PORTER:
Hence the smells, the taste, the visions.

DENISE LEWIS:
And it's in your frontal lobe, which is sort of the emotional part of your brain, which would probably contribute to some of these things that were going on that were very strange. So they admitted me that night to monitor and gave me steroids to get the pressure down. And then within, I think it was probably a fortnight of that, I was in hospital having an operation to remove what they said was a large tumour. I mean, when you talk about large tumours, I mean, to me you think, oh, maybe the size of an apple, but it was actually the size of a grape, but that's apparently big in brain tumour terms. So that's why I was having the issues really,

PAT PORTER:
That was quite speedy in the end, speedy from scan to overnight, to getting it removed. Can I just ask you, before you tell me a little bit more, can I just ask, it's a silly question really, because it's an obvious question. You must've been scared witless, and very worried.

DENISE LEWIS:
Yes.

PAT PORTER:
Or was it just too many things happening? You just went with the flow? Were you in panic? How does somebody deal with that news? It's ginormous and then in the brain.

DENISE LEWIS:
Yeah. I think initially, yeah. I think initially Pat, it didn't really sink in straight away. I think it was when I saw the consultant who told me that this was going to have to be removed, that's when it sort of started to sink in. And I then started to have anxiety and panic attacks.

PAT PORTER:
Completely justified! Yes.

DENISE LEWIS:
And I just remember on one particular occasion when my sister came to see me, waking up one night, just getting into bed with her and just sobbing, because I just thought, why is this happening?

PAT PORTER:
And very scary because you don't know the end or the outcome at that point.

DENISE LEWIS:
No, you don't.

PAT PORTER:
You just don't know what's going to happen.

DENISE LEWIS:
And at that point, although they believed it was non-cancerous, until you've actually had the biopsy, they can't really truly confirm that. So, they were sort of 98% sure that it wasn't cancerous. So I mean, I then went and had my operation.

PAT PORTER:
Which hospital? Was it Leeds, was it anywhere else in the country?

DENISE LEWIS:
Salford Royal, because at that time I was living in Manchester.

PAT PORTER:
And that's a specialist area?

DENISE LEWIS:
A specialist, yes, specialist hospital. So I had that done, and yeah, it was really strange. I had to wait for the results to come back to say that, you know, it's non-cancerous, which thank goodness it was non-cancerous.

PAT PORTER:
Wonderful news. Yes. Can I ask you just the aesthetics of it all for the listeners? I'm assuming you had to have some of your hair shaved away or not?

DENISE LEWIS:
No, I was very lucky.

PAT PORTER:
Did they drill in? I'm asking you all the things that I visualised in my head about drilling into the head to get to the brain.

DENISE LEWIS:
Yeah. Well, I'm a very strange person. I think Pat.

PAT PORTER:
But a fabulous person at the same time!

DENISE LEWIS:
Before I had the brain operation my brother had previously had, it was a different condition, but in the brain, and he'd had to have brain surgery.

PAT PORTER:
I think we need to chat to him too.

DENISE LEWIS:
Yes I think you should.

PAT PORTER:
Yes. We'll get him for another chat.

DENISE LEWIS:
But he gave me a load of CDs on brain operations.

PAT PORTER:
Really?

DENISE LEWIS:
Not CDs. What do you call them now?

PAT PORTER:
DVDs.

DENISE LEWIS:
DVDs, yeah.

PAT PORTER:
Oh he wanted you to watch stuff?

DENISE LEWIS:
I did watch them because then it prepared me for I was going to have to go through and how it all affected you and things.

PAT PORTER:
That's incredible.

DENISE LEWIS:
Well, I don't know whether everybody would do that, but I sort of felt the need to do it really, as did my brother.

PAT PORTER:
No, I like ignorance is bliss. Just don't tell me. Just do it and wake me up at the end.

DENISE LEWIS:
I don't blame you.

PAT PORTER:
But we're all very different, and that's why it's good to talk about it. People need to hear how they can relate or not relate, but we're all so different.

DENISE LEWIS:
But I was very fortunate that they were able to do the cut. It goes from the front of my head to probably nearly to the back of my head. And they opened the head up, obviously, and then they have to remove the flap, the bone flap that's within the brain.

PAT PORTER:
Wowzers. Oh my goodness.

DENISE LEWIS:
To be able to get to the brain and to take the tumour out. So all I remember is I knew, they told me I'd have my head stapled, which I did afterwards. And then I remember waking up in hospital with this massive bandage thing on that was pulled so tight because it's to stop the brain swelling after the operation.

PAT PORTER:
Oh my goodness. These are the details we need to hear. No, this is it. Nobody knows you've experienced it. Nobody knows. Hence us chatting about it.

DENISE LEWIS:
I think I sometimes found, that's the one thing I remember more than any other pain, because I just wanted to get the thing off. It was so uncomfortable. But that stayed on for a few days.

PAT PORTER:
So the relief of that being cut off.

DENISE LEWIS:
Yeah, it was fantastic.

PAT PORTER:
And maybe getting some sleep, maybe?

DENISE LEWIS:
Yes. Yeah. Although I think I was quite drugged up at the time.

PAT PORTER:
That's good, glad to hear it!

DENISE LEWIS:
But they don't keep you in very long, which I was really surprised. I think I was only in a couple of days. And then you go home. And then what was very, very difficult for me was that my son was going off to university a few days later, and I was really, really worried about him going to university when I was poorly. And I remember actually sending an email to his tutor just to forewarn them.

PAT PORTER:
Have a bit of empathy towards, yeah, yeah. Look after him.

DENISE LEWIS:
Yeah. Which when I think about it, I think, well, I'm shocked that I actually even thought that way because my thoughts were all over the place. But I think that's, when you're a mum, you do sort of think about your children, don't you? And how it might impact on them. And when you're the person that has that issue, yes, you're not very well, of course you're not. But it greatly affects the people who love you and are around you, your friends, your family, your partner. And I think that was very, very difficult for them all.

PAT PORTER:
And then maybe not talking to each other too, worrying individually.

DENISE LEWIS:
Yes.

PAT PORTER:
And knowing one that each other's worried but not actually voicing that can be an issue.

DENISE LEWIS:
Yes. I think for Paul and Barney, I think Barney sort of buried his head in the sand, didn't really get the enormity of it. My stepson Will, he talked to his dad about it.

PAT PORTER:
Okay, that's good. That's good.

DENISE LEWIS:
And Paul was, he had to be this strong person and deal with everything because obviously I wasn't well enough to deal with things that were going on. And it sounds ridiculous, but things like you are so drugged up with painkillers, you can't go to the toilet. That in itself is incredibly painful and you don't know what to do with yourself. Your body is just completely messed up with all the medication, et cetera.

PAT PORTER:
I never thought of that. And am I right in saying, because obviously they've been in there poking around, so they've obviously touched and affected other sensors and other parts of the brain. So as well as being muddled up with drugs, you're actually cognitive would be muddled up until that all settles back to how it should be and healed. So as you said, your motor skills, like physically just going to the loo or getting yourself dressed and things where you needed support.

DENISE LEWIS:
Yeah, very much so. I mean, think initially I thought, because I was in a bed next to somebody who just seemed to spring up out of bed and was fantastic. I thought, that's going to be me. I'm just going to have my operation and I'm just going to wake up and everything's going to be fine. Yeah,

PAT PORTER:
It'll be sore for a while, but I'll be okay.

DENISE LEWIS:
Yeah but I'll be fine. Yes. But no, that wasn't the case because this has been going on for now for nearly 10 years. And it was really strange because I had lots going on the side of my body where the brain operation had been. And technically if there is an issue, it should have been on the other side of my body.

PAT PORTER:
Okay.

DENISE LEWIS:
So the surgeons et cetera couldn't understand really why I was having all these issues. They didn't really relate it to the brain surgery to some extent, although they did say it could be that, but they sort of hadn't come across this thing where it was on the same side as the brain injury. So it was things like numbness, tingling. I couldn't get my balance. I used to walk like a puppet. I couldn't coordinate my legs properly. Lots and lots of fatigue, which is very, very normal for a brain operation, those kind of things. So I think it must have been probably eight months or so before I went back to work. And possibly in hindsight, I think I probably went back too soon. I tried working from home as well prior to going back properly. And in fairness, the school I was working at, they did make adjustments for me.
I was head of learning support. So I used to spend some time in the classroom and some time managing the staff. But they were really good in that they thought, well, it's probably not safe at the moment for Denise to go back in the classroom so she can just work in the office and I could adjust my hours and things, which was incredibly useful. But as time went on, I was getting more and more fatigued and more and more feeling unwell. So after a period of time, I kind of realised that I wasn't going to kind of get immediately better. So I had to go off sick again. And eventually I had to retire on ill health. And that's when I started to have more sort of mental health issues because I couldn't accept that I had to give up work.

PAT PORTER:
That's very natural. I can understand that.

DENISE LEWIS:
Because for me, from the age of 16, working has been me, what's been my life really. And I've always loved to work

PAT PORTER:
And pardon the pun, but that's a mind shift. That's a whole...

DENISE LEWIS:
Yes it is.

PAT PORTER:
...another emotional massive change in life.

DENISE LEWIS:
Yeah. Yeah it is.

PAT PORTER:
That's difficult. I understand that, yeah.

DENISE LEWIS:
So really, I mean, yeah, I've had lots of mental health issues. I've had to see the neuropsychologist. I've seen counsellors, a variety of things now. So I'm on lots and lots of medication, which I don't think really helps my situation because there's lots of side effects from that as well. And I think...

PAT PORTER:
One will affect the other and so on.

DENISE LEWIS:
Yeah. And I think my problem has been sort of, I'm always looking for the cure as it were,

PAT PORTER:
Your research and your own symptoms, your own life to control, just looking for some control back. I get that. Really. And your independence and back to being me, being you. I get that.

DENISE LEWIS:
And that's what they often would say to me, you're probably not going to be the old Denise, but you are a new Denise, and you've got to learn how to live with that and manage that, which I have never found particularly easy. And I think in all honesty, Pat, I can say I think I've finally reached that point where I have accepted, and I think part of that was because over the last, I think it's the last year or maybe two years, I can't remember exactly when it was, but I finally got a diagnosis of fibromyalgia.

PAT PORTER:
That one I know, but we'll come back to that in another conversation.

DENISE LEWIS:
Yeah. It's not a nice thing to have, is it?

PAT PORTER:
No.

DENISE LEWIS:
And although I got the diagnosis and that made me feel better because I thought, well, I haven't been imagining it. These things are genuine. They are happening to me. I then found out that really there isn't a cure for fibromyalgia. It's just a case of trying to manage things, which is kind of what one of the first things I did was to come off the pain patch, because that's the advice. Painkillers don't really help. I was drugged up with painkillers, so I have managed to do that. I wouldn't say the pain's any better, but it's not got worse. So now I'm off strong painkillers, which is a good thing.

PAT PORTER:
Good. Well, I'm going to wrap it up, but can I ask you, can we have a round two? Can we, Denise, have, because we've touched on the aftercare, how you've changed, the new Denise from the old Denise, the mental health side of it, and the fibromyalgia. Would you be willing to come back and we'll continue talking more about this?

DENISE LEWIS:
Yeah, absolutely. No problem Pat. I hope it helps anyway in some way.

PAT PORTER:
Definitely. I would like folks listening to send me messages, ask questions, and we'll try and answer them. But I am eternally grateful for your openness.

DENISE LEWIS:
No problem. Anytime.

PAT PORTER:
And sharing and just telling it how it is. It's been fantastic. Thank you, Denise.

DENISE LEWIS:
No problem, Pat.

PAT PORTER:
Much appreciated. Talk to you really soon and you continue to be the new amazing you.

DENISE LEWIS:
I'm trying.

PAT PORTER:
Thank you Denise.

DENISE LEWIS:
Thanks Pat.

PAT PORTER:
Bye-Bye.

DENISE LEWIS:
Bye.