Let's Talk About Brain Tumours
Join us as we talk to about all things brain tumours with those who have been diagnosed, their friends, parents, partners and children as well as with researchers, fundraisers and advocates. Find out how The Brain Tumour Charity is working to improve outcomes for those who are diagnosed with this unforgiving disease.
Please Note: We recognise that everyone's experience's are unique. Our guests are sharing their own personal experiences of diagnosis, treatment and care. These may differ from yours or those of your loved one.
Let's Talk About Brain Tumours
Episode 18 - Life after active treatment
In this episode, we talk to Lucy and Lauren who share what it means to be successfully treated following a brain tumour diagnosis. They share the ongoing impacts caused by both the brain tumour itself and the treatments used to treat their tumours and how this affects all aspects of their lives. They also discuss what being 'cured' actually means from their perspective.
If you would like to talk to a member of the support team you can email support@thebraintumourcharity.org or call 0808 800 0004. You can find out more about the support available by visiting our website here
If you want to find out how you can support research into finding not only a cure for brain tumours but also better treatments to reduce the long term impacts of treatment such as those discussed in this episode you can find out more on our website here
If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org
Welcome to Let's Talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates from the brain tumour charity about what we're doing to halve the harm and double survival. Welcome to the podcast. I've got with me, Cam today and we're going to be talking to Lauren and Lucy about ending active treatment and what being cured actually means after you've had a brain tumour diagnosis. So welcome to the podcast Cam. It's lovely to see you again.
Cameron:Hi, nice to see you as well. Nice to get back onto the podcast again.
Sarah:And Lucy, do you want to tell us a little bit about how you've come to be here today?
Lucy:Hello, so my name is Lucy. And when I was three years old, I was diagnosed with a medullablastoma brain tumour in 1998. I was in holiday in France, so I was rescued by an ambulance. When I got back home. From October to December in 1998. I had surgery to remove the tumour, through nearly all of 1999 I had chemotherapy along with radiotherapy treatment, a Hickman line for the doctors to give me anaesthetic and having lots of blood taken which being being three wasn't the best thing in life. All my treatment was finished one week before Christmas, and it hasn't returned.
Sarah:Oh god that one week for Christmas about that was a good Christmas.
Lucy:I think though, I was excited about Christmas. But I think the main thing I was excited about was having a proper bubble bath. as having the Hickman line, I couldn't get it wet at all. So baths that year were misery.
Sarah:Thank you for that. And what by you, Lauren, do you want to tell us a little bit about by you.
Lauren N:Hello, my name is Lauren Nicholls snd I was diagnosed with a brain tumour called a piloyctic astrocytoma. I was treated with chemotherapy, before the tumour came back again in 2007, in which I was then treated with radiotherapy, or my treatment was then completed in mid 2008.
Sarah:So all three of you have completed your treatment. What I'm wondering at this point is what does that mean, when you finish treatment most people would assume that that's it, end of story you go back to your normal life, and it's all good. Is that your experience?
Cameron:My experience was you finish treatment, you think that the end of it but then you go home with a boatload of tablets, you've got regular appointments to go check ups. I had regular blood tests, which I still do this day, checks my sodium level in my blood, check, it's stable. One major thing is I don't have a thirst so I have to regulate my own fluid and that's why the check my sodium level, the biggest thing is accepting the change, because to everyone else, they don't have to go to the doctors every week they don't have to get checks, don't have to take medication, etc. So
Sarah:what about you, Lauren? What does ending out to treatment like you said it was 2008 did you say that you finished treatment? So it's been quite a long time so you just live your life normally? Is that how you experience it?
Lauren N:Not really, I mean, nearly 15 years on, and I'm still on like regular tablets the doctors have kind of said you could be on these for the rest of your life because without those, I don't know how things have be. So yeah from completing my treatment and being in remission, I still feel haunted by the late effects of the tumour, you know, it's left me with a right sided weakness where I can't open and close my hand independently The doctors were like, you might not be able to drive which is a big thing because I don't mean independence you know. They've also said oh, well, you've got to have regular blood test to make sure that things are are that I'm actually terrified. I'm, so needle phobic. So for me that's not very good and then you know, you get letters through the post going, oh, we'll have a checkup here and and checkup there. One doctors like Oh, can you go for a blood test? And the other ones like can you go do this? And I still feel very conscious still of like walking down the street. What people think you go down the street or you're going to like primary school, secondary school college people kind of just stare at you, I've noticed this a lot from other people and they don't know what to say to you. Everyone defines themselves as normal like, that's the like word if you like and I feel like a lot of people that have been affected with brain tumours, aren't seen as normal, you know, you kind of get strange looks, and you're forced to kind of tell them, what's wrong with you. I've experienced that quite a lot through all of my life even now. So I think that's kind of a big aspect for me.
Sarah:Yeah, absolutely. And it's quite a big one, isn't it? What does normal actually mean? Like you said, you don't know what you would have been like if you didn't have a brain tumour. But you know that a lot of the things that you are dealing with now, that wouldn't have been what your normal would have been had you not had a brain tumour
Lauren N:Definitely. Yeah.
Sarah:What about you, Lucy?
Lucy:Yeah, there was so much to take in there, my mind is just full of things. So I was thinking about the word normal, and about being cured, maybe in the hospital. So after treatment was completely finished. I'm cured, the tumour hasn't come back, though, it has left side effects. So for example, like a normal person wouldn't be taking Genotropin that's that was to help me grow and then that helps me with energy. I have a low bone density from the radiotherapy that was zapped down my spine so I take vitamin d3 tablets for that. There's quite a big gap from radiotherapy to my third year of university, which was when it started, I got diagnosed with epilepsy
Sarah:And was that as a result of your treatment that you had,
Lucy:yes, that was from radiotherapy. So, radiotherapy, So you're seizures aren't actually to do with a brain I was given back in 1998 to 1999. and from then on, everything was completely fine. So through then I just have regular blood tests. And then suddenly, I was in my third year of university. I was in a restaurant with a friend. Suddenly, I was trying to talk, but my mouth paused, there was a, I could feel a twitchy, feeling on the corner of my lip. Everything had paused, I couldn't do anything, I had no control over myself. I then had an unconscious seizure, I fell backwards on my chair. The doctors thought it was a one off the reaction to some anti malaria tablets I'd been taking during and after Dominican Republic, I went to in half term. In 2017. I had an MRI scan, which showed these micro little tiny dots called cavernomas, which is what the radiotherapy left, which were causing these little epilepsy reactions. tumour they're to do with the treatment. It's sort of like, just making me think of the food chain. So you've got the cancer, then you've got the radiotherapy to treat that with the cancer. And then you've got the epilepsy that was that was caused from the radiotherapy.
Sarah:And I think that's a really important distinction, isn't it? Because treatment for brain tumours are horrific in the sense of what you go through when you're actually having them because chemo surgery and radiotherapy are the standard treatments, but they all come with their own set of issues.
Lucy:Yeah.
Sarah:Cam you were nodding your head there.
Cameron:Yeah, it just seems like the fallout, you know, you're using something to treat one thing, but like chemotherapy is quite a toxic chemical. You know, the different chemo's you can have and radiotherapy is really quite powerful. So the fallout with that of, you know, taking one big damaging factor to your body out, or it leaves damaging effects, and especially with your brain must do more damage, you know, than say about it in other places in your body.
Sarah:Yeah, I mean, obviously, Lucy and Lauren, you were quite young. I know, Lauren, you were a bit old when you had your recurrence. But was anybody your family or yourselves ever made aware of the long term effects of having treatment?
Lauren N:For me, they told me at first I had a muscle imbalancement. and obviously then we figured it was a brain tumour, but there wasn't at that specific time there wasn't really anyone available like the brain tumour charity just wasn't available at that kind of time. And we were always just told oh come and speak to your doctor or your GP kind of. Then my mom and dad were a little bit like well you constantly go into them to win and froing. And mom and dad were just like, you know, all you need is also they're kind of relied on themselves to kind of make me feel better, get me the relevant tablets, etc.
Sarah:But the only one actually say to you, when you have chemotherapy or radiotherapy, radiotherapy has these impacts later down the line, some of the side effects that you may encounter from having this treatment?
Lauren N:Not that I knew of, because at the time, it was a life or death situation, I either had it and lived, or I didn't and the chances were that I ended up dying. I mean, my heart stopped a couple of times. So I think they were just like, we just need to kind of get on and do as much treatment as possible to make her better.
Sarah:One of the things that as a charity really look at is the quality of life and part of that is around getting treatments that have a less invasive and cause less damage, because we know that some of these treatments have such severe effects on the quality of life and I think that's something that people don't necessarily think about. They see somebody who's maybe like you've just said, they see that you've got epilepsy as a consequence of radiotherapy. People may look at you and think that it's your brain tumour did that, but actually, it's the radiotherapy?
Lucy:Yeah, it wasn't the brain tumour at all. But without the radiotherapy, I, I wouldn't be here. It had to be done.
Lauren N:I mean, if my mum and dad wouldn't have made that decision, I might not have been here today. I guess you've kind of just got to look at the positives in that aspect.
Sarah:Yeah, absolutely. And you've touched on some of it, but you've obviously life after active treatment, at the very least, you've talked about some of the ongoing challenges that presumably you kind of know that you're going to have to sort of adapt and live with, as you go through life. How does that affect you on a daily basis, some of the things that you are now dealing with, for example, on job applications, do you write that you had a brain tumour? Because technically, I guess, do you consider yourself now to have a brain tumour? Or how do you describe that when you apply for a job, for
Lauren N:for me, I just, I started off by putting, I have a example, slight right hand side of weakness and then as I've got a job been successful things my parents had been like, maybe that's not as relevant now because, well, I went through one job application and the people didn't employ me, it was quite discriminative. But they didn't imply me on the basis, obviously, because I had a right side of weakness, they thought I would be less able. I still get it now. Like the other week, I tried picking up a table to move it and someone went, Oh, no, I'll do it Lauren you've only got one hand. That, for me, is really, really upsetting. So I kind of just put that on my CV, I feel like in the last application that I did for Tesco, I didn't put it on there. Because I was scared that they take that under that oh no in the bin kind of thing and I wanted kind of an equal chance as to someone who in a way was normal.
Sarah:That word normal again. You had that word normal. I could see you nodding that Cam
Cameron:I don't put it down on the application or don't put it on my CV I do try to say in the early stages, if not in the interview. I feel like I've found a way of talking about it now without going into it because it's been it's gone. Yeah, you do have some online facts you still need to be aware of, but don't make it not an issu but like a big point, which stands out, that becomes like they see it as a problem.
Lauren N:Yeah.
Cameron:Funny enough. Last week, I went for another interview and I spoke to the guy though, it was a manager and I just casually brought it up and I said, my memory is not that good that I take medication, but I'll give them a solution to it. I say it takes me a bit longer to learn so obviously I may ask more. I'll take the notepad round with me so I can write note. And I said I take medication and I'll either go out of the way and it'll take me two minutes or I'll be having them in my break time. It wasn't a problem at all but I feel it's not everyone wants to do it and I'd have think everyone should do if they don't want to but I feel it's an obligation and let them know that the start rather than finding myself in a disciplinary later on.
Lauren N:Completely agree Yeah.
Sarah:Do you say that it's because you've had a brain tumour? Or do you actually just focus on the impacts that you're actually dealing with?
Cameron:I try and just let know the problems, I think that might arise and then I say it's because of a brain tumour, because about 12 years ago now, so that was 12 years ago that's been and gone, but I've got these underlying effects and I try not to dwell on it so it doesn't stand out to become a negative against me.
Sarah:This is interesting, you will get quite a long gap. 12 years, 15 years, I can't remember how long yours was Lauren, but quite a big, we're tallking years, from when you were in active treatment, to where you are today still having to deal with the effects of that that's very much impacted by your brain tumour diagnosis.
Lucy:Yeah, yeah so there's a big gap. So yeah, I was thinking about what was mentioned earlier about job applications. So I was thinking back so the job that I've got is, is fine. Everything that I've mentioned to the members of staff they can completely understand or take into account in the past I was working in childcare and my very first placement at a nursery, I was thinking, oh, yeah, the cancers in the past, like it shouldn't, it wouldn't affect me at all. Like if I didn't mention it to them, which I didn't. And then I realised when there was one member of staff in particular, where I wasn't given much, thanks, thank you for doing this or doing that and she'd get really cross or annoyed with, with things easily and I started to notice that I had a lack of confidence and self esteem, which I've had since back in 1998. I've never really been that strong with confidence. I still get upset quite easily with little things.
Sarah:Lauren, did you have anything to say on that?
Lauren N:Yeah, so for me, it was a lack of self confidence kind of like getting used to like the new way of life you know, trying to make friends things like that was always quite hard for me. And then obviously, now going up, I'll be 20 next Tuesday, I kind of feel like, I'm still kind of finding my way ;ike, even now, I'm still trying to accept myself, for who I am, things like that. I found it quite difficult when I started at Tesco and I met someone because then it was quite difficult for me to explain how I'm like that. I still feel like I'm kind of being judged almost and like, I'm still being haunted by it now, but you just kind of get on with it as best you can. And kind of try and accept yourself I can do this. Why am I why am I feeling like this? You know, I should just be the same as anyone else. That's kind of where I'm upto really, but yeah, just kind of taking things. Like, you know, if I get called for a blood test, or if I'm like, you know, have an appointment with doctors or whatever, you know, just kind of go when you just tell them how you feel and yeah, take it from there really.
Sarah:I think it would surprise a lot of people who haven't got brain tumours, how much ongoing medical treatment you all have, because I think people just automatically think, but you've had a brain tumour, you've had chemotherapy, you've had radiotherapy, you've had surgery, whatever the treatment option was, and then you just go back to normal life. Most of you are on medication for the rest of your life, aren't you?
Lauren N:Yeah,
Lucy:Yeah.
Sarah:Do you consider yourself cured?
Cameron:I wouldn't say 100% cured because a good 99% of people come out with some after effects, some it's not that wasn't the same as you were before but it's how people want to lock in how people want to feel if they want for their own peace of mind, say they're cured then it's each to their own but I don't think at all think there ever is 100% cure for brain tumours
Lauren N:in the sense of the brain tumours gone and it's cured yes. But in the fact of the active treatment, well, not particular. I think for me, there could be a better word that doesn't just say you cured because like I say yeah you are for the brain tumour, but you're still going through the side effects and the motions of every day, you know, having to tear tablets having X, Y and Z wrong and things like that. I don't think in my opinion, the definition of cured is coming back to the word of normal you do you just a normal regular person I'm not that and I'm sure you guys have other things, you know but in that aspect then yes but cured, no.
Sarah:Yeah, thank you Lauren I think that's a really good way of describing it. What what do you think about that Lucy?
Lucy:Yeah, I was I was thinking I can completely agree about like thinking of the word normal, and not feeling like 100%. cured. In a way, one sense cured is the, sorry, having the tumour removed, that's all sealed up having a mark from having the Hickman line taken out, it's all completely done. But then, in another way, you don't feel like the same as every body else, just as a, like in a in a natural way. Where, like, people haven't suffered from anything serious like this it sort of makes me feel when it probably probably does make a lot of other people feel that I can't, I find it quite hard to be amongst, like everyone else in terms of socially, just trying to act as a normal way, but I can't because because from what I was, I've had it, it affects me, I can't, I can't be the same I can't. I can't be someone that I'm not because of because of what's happened.
Lauren N:I can completely relate Lucy
Lucy:After having treat treatment finished, everything's gone. In, in that way, you could think of as being completely cured. In one phrase in relation to that. I feel as though like ourselves, in a way could be maps. So for example, I have, we all have marks on ourselves, in many perspectives, not just cancer but for example,manybe with us like, for me, I have a mark on the back of my head, I have a, I have a mark below my shoulder and it's like, it's like the map that shows us where we've been. So in relation to that, we're, we're cured in one perspective. But in another perspective, having that done, I or we or a lot of other people don't feel the same with don't feel normal. And for me, and for a lot of other people, I'm sure that sometimes I feel in the way that I'm on the outside, in a way, as I find it hard to like socialise or be a part of things in life there's like an invisible line that I have to cross to be a part of everything and I can't ever cross it.
Sarah:Absolutely, absolutely. Thank you for sharing that. That is something that I think a lot of people will relate to that feeling of being on the outside and just not being able to cross that line of fitting in with everybody else because we all have our perception of normal. And when something like life changing, like having a brain tumour happens, that throws normal out, you're suddenly left with what is this now, if you could give one tip to somebody of how to move through this if they're feeling like you said Lucy they're feeling on the outside or struggling with people staring at them or what what advice would you give?
Lauren N:For me, I would surround myself in as many family members as possible. Friends, family, cousins, whoever, even like health care professional or, you know, a charity, just someone to kind of help you get through those early, middle late stages. Because for me when I was alone, and felt really isolated, and I'm like, brain damaged from this brain tumour, my family and my friends kind of all came together and I was like, look, you're not like you've really, really not and I found that really quite positive to help kind of like pull myself together and be like, look, this is a new you. This is you and you're gonna go out there and you're gonna be confident and you're gonna take everything, every opportunity that comes to you and you're gonna use it to your advantage. So in that aspect, I feel like friends family, and the brain tumour charity is a really good stepping stone to help you kind of get your life back on track and feel empowered and confident.
Sarah:Brilliant. That's amazing, Lauren, what about you Lucy?
Lucy:I was just thinking about if, for example, you were being stared at, or having certain thoughts that other people think that you're, like, maybe one word could be weird, or like something's not right, like what's going on? That's, like, that's their problem, because that's who you are. You've, you have this, for example, you have lack of confidence, or you have this certain part of you from from cancer, and you can't change tha and if people think that's weird, I mean, that's that that's their problem. You can't change who they're around and they, like people are very, like, highly likely don't understand what it's like to have cancer. Try not to, like get too upset or too, like don't take it on too much about what other people think about you.
Sarah:Absolutely.
Cameron:I think the biggest thing is acceptance, accepting the change, accepting things are going to be different once you get over that. I think that's the biggest hurdle.
Lauren N:Yeah, that is a good one, Cam
Sarah:Been a really good conversation. I'm really glad that we did this. Thank you, Lauren. Thank you, Lucy.
Lauren N:Thank you. Thank you, Sarah.
Lucy:Thank you.
Sarah:We hope youenjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at thebraintumourcharity.org or email our support team at support@the braintumourcharity.org. And finally, before you go, if you enjoyed this podcast, please can you leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness