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Managing my memory- Insight and top tips from our young ambassador, Rebecca.

Recently we were lucky enough to have some time with our wonderful Young Ambassador Rebecca, to explore what being a teenager with a Brain Tumour was like for her.

Rebecca was joined by two teens from our community, along with our Senior Children and Families Support Worker, Lisa Hannington-Collins.

Rebecca was diagnosed with an Astrocytoma at 14 years old. She underwent several surgeries to remove the tumour, along with follow up treatment. She now has a lifelong condition called Hydrocephalus which in her words is “to do with build-up fluid on the brain”.

Rebecca, now 26, explains “I do most things I want to do in life (with some assistance at times). But that’s kind of where I’m at now.” 

In this chat we explore Rebecca’s top tips and experiences about school and going to University, managing her memory and fatigue throughout education, and beyond. We have used the questions put forward in our chat by both Lisa, and the two young people who were present. We really hope that you find this chat both helpful and informative.

If you want to chat some more about the questions in this blog, please feel free to call our support line on 0808 800 0004 Or email our Children and Families Team on childrenandfamilies@thebraintumourcharity.org

Rebecca, what was it like for you, missing school?

I spent five weeks in hospital during the summer holidays. My main concern was that I wanted to be back at school! I wanted to be back at school in September, because I wanted to see my friends and I wanted to just be normal. So I wanted to go back. Alas, I had my treatment.

I really tried to get back to school quickly, but really had to slow down because I went way too fast way too quickly.

Rebecca, I haven’t been to school since my diagnosis, how did you cope going back?

I couldn’t go back to school full time, because I was just far too tired. I needed to recover. So I slowly eased back into school, I didn’t do it too fast. I just made sure to pace myself. We put a bit of a plan in place to say, ‘right, so for the first month, I’m just going to do two days a week’. And then I got some work from the teachers to do at home and I did a little bit, where I could at home. And then eventually when I felt ready, I really led it and I chose to go back more days.

I suppose the other thing that was quite big for me was going out to see my friends because I looked quite different. I’ve got lots of long hair now. But I had lost a lot of hair. I’d lost a lot of weight. I looked so different. And I was really worried what my friends might think or what people might think. But the school were really good, I was allowed to wear hats. When I wanted to, I wore my PE kit so I could be more comfortable.

I had a policy in place, if I wanted to leave a lesson, I could just leave a lesson, and I could just go to a safe place, go to the school nurse or the reception and have a sit down or have a timeout. Because the teachers all knew that I’ve been through something really big, bigger than I’d ever done in my whole life. Sometimes, unexpectedly it can just take you by surprise, you just need a minute.

My top piece of advice would be, that when I felt comfortable, the best thing I could do was to tell someone how I was finding things – tell a teacher, a tutor, a friend, my parents, because I felt very much when I went back to school, I really wanted everything to all feel like it did before. And I wanted to go to all my classes, and I wanted to do all my sports. Realistically, what I needed to do was to open up about how I was feeling.

I’m worried not to have my mum around, as she’s the person that helps me the most…

I think you won’t really know how you’re going to feel until you get there. So I was also very, very worried.

The fact that I had my friends, and it was quite a familiar place (because I’d been to the school before) that helped me to kind of settle back in.

One thing I did have as well – I’m very, very close with my mum- we spoke to my teachers about being able to contact my mum in the school day. So if I wanted to, they let me pop to the reception and make a phone call or send a text at break time and lunchtime, so that I could talk to my mum. And she knew that I was going to text or call at that time. So then I could reassure myself in my mind, because I knew say at lunchtime, I’m going to just touch base with her, I’m going to call and have a have a quick chat. And I found that really helpful. So it might be worth asking the school if you could do something like that. Because it might make it much easier as then you know you’re going to talk, or you could even have a little video call you’ve got a phone that could do that, or you could use a school computer.

I find I get so tired, so easily, it really frustrates me. How do you cope with this?

It is really frustrating. So I used to do a lot of netball, but my main thing was dance. Ballet dancing is quite physically enduring, then you’d go up on your pointe shoes and you’ve got a lot of weight, you’re holding up your own core strength. Because I also had the like abdominal surgery, my core strength has just gone and it is so frustrating, particularly when there are people around you who are doing it- I totally understand that.

I really pushed myself to keep going and I’m so glad I did- to keep going to the class because I easily could have just gone – ‘I’m not going to go because I can’t do it.’ But that wasn’t true.

Over time, my abilities really increased. So it was kind of practice and building myself back up to it.

Also, I used to make sure that when I had a ballet class, I would have a more restful day. So I would say go for a nap before I went to the class, or I would just make sure that the things I was doing in the day weren’t tiring- so if I could I wouldn’t go to ballet after school, for example, I would do it on a weekend where I could say have a more relaxed morning.

Do you have any ‘Top Tips’ for studying/exams?

After I had all my surgeries there were so many memory challenges and headaches and fatigue, and all those things. The way I found it best was just to try lots and lots of different ways to remember something.

I did mind maps, I tried teaching them to my mum or to my friends. I tried recording my notes and then playing them back to myself- like I would if it was music. And I tried practice questions, we could get them from the teachers.

Also cue cards. Just lots of different forms!

I actually covered the whole of the bathroom door in my parents’ house with sticky notes that had lots of different things on them. And every time I felt like I could remember them, I would take one off and then I would try and learn it again and then stick it back on to see if I could remember.

With any work, I would always say, an hour is the most I’ll do, and then I’m going to have a break. Because doing it in small little chunks really helped my fatigue. I’d then have food ready. And I’d make sure I always had water, because staying hydrated is so important.

I was able to get some free software through school. It had things like dictation software on there, so I could speak my assignments, I would just speak them to my computer, and it would write most of them down, even the punctuation, it was amazing.

And then I also had a piece of mind mapping software. The school provided these things I didn’t have to buy them myself, there was no cost. But I just found putting things in as many different formats and engaging with them in as many different ways as possible, whether it was I watched a video about something and then I wrote it down in a notebook or I then tried to tell my mum what the video is all about, and then re-watched it to see if I’d got it all.

If I couldn’t remember something, if it was like a hard chemistry formula, I would make a big mind map/poster of that formula. And you put something really weird on there like a picture of a duck! And I’d be sat in my exam thinking- this has something to do with the duck.

Or writing a story, we used to write silly stories about certain things, to try to remember the sequence of something and somehow you’d remember it because it was so strange or unusual!

What I found the best to do was either with my mum or my dad or with a friend, I’d make like a joint revision plan. So on Monday, we’re going to do maths and on Tuesday, we’re going to do English. And it make sure that somebody else has the plan, then it wasn’t me who had to be held accountable to remember to do the plan! Because if you’re trying to remember so much, the last thing you need to do is try and remember to check your calendar or to check your notifications. So I found that was really helpful.

And remembering that even though you’re trying to study or you’re trying to go back to school, or you are applying for a part time job, or even as an adult when you’re applying for a full time job;  you have to look after yourself as number one.

I’d always like to set a timer for studying as well, because you can just get into the swing of things, and its fine to go for a little bit longer. But if you get into the swing of things and go for three hours, you then realise you can’t use the rest of your day, because you’ve just exhausted yourself.

Find something that you can do that de-stresses you, something that’s actually fun or that you enjoy doing. I used to put that into my schedule, I used to be like, ‘right, if I feel up to it, because if I don’t feel up to it, I’m just gonna go to bed’. And that’s fine.

So I’m going to ring my friend, and I’m going to tell them that we’re going to go on a video game at half past seven, and then there’s somebody else who can say- ‘it’s after seven, you said you’re gonna go on a video game’. It’s amazing how many people will just help.

Is there anything you find which negatively impacts your memory?

If I get really emotional, my memory is worse. Or if I’ve had a stressful day at work, or something’s happened that’s made me upset or overwhelmed, even watching an emotional movie and I have a little cry, I find that actually will impact me for a lot longer than I think it used to.

It’s mainly tiredness that triggers me.

What would you say to your 14 year old self, knowing what you know now?

Oh, I would just be so much more kind to myself. And I would just tell myself that, it’s okay to feel how I felt because I found my mental health was quite challenged at times- it was hard. I just wanted to be normal, but that doesn’t actually exist.

I just wanted everything to go back to how it was before. I felt like the world had done me wrong. But actually now I look and I think there are so many things that I would have said no to before, but because of my experience because I had a brain tumour, I kind of view life a bit differently now.

And actually it’s okay to have been upset, or to have not wanted to go to so and so’s party because you felt too rubbish, and I didn’t have to be upset about that. It was okay. And it’s okay to have got a really, really awful grade in your second chemistry exam on your A levels, because I was having a bad day. I think I just needed to be more kind to myself. Remembering that there are some really good days, and you’re doing your best.

Is there any advice or suggestions for our parents out there who are supporting their child/teen with a brain tumour diagnosis?

I’m sure my parents won’t mind me saying this, but sometimes (because, they love me, and they care) I felt like they were being asked to make a lot of choices for me. I felt like I was a young woman. And that if I said I could go to the party, I was like, ‘I’m fit and well enough to go to the party!’ Actually, they probably had a lot of the correct thoughts like- ‘you’ve been really tired this week’. But I think it’s understanding that we know that most of the things our parents are doing, are because they love and care for us. They want to look after us, they want to put our best interests at heart.

I think it’s also parents understanding and my parents did do this really well, is understanding that you are a young person, and that, you’re going to grow up, like all young people grow up, and you’re going to go to a party and stay up a bit too late. And you’re probably going to, choose to spend all of your money on sweets, or on that new video game that was like 50 or 60 pounds, and then not have any money for the bus the next week. And, it’s still okay to grow up and to live your life taking those educated risks that you would do if you hadn’t have had a brain tumour diagnosis, or you hadn’t gone through anything.

I think if I was talking to a parent now, I’d say, find things that you’re comfortable with that can also allow your child to do what they want to do. So if they do want to go to the party, how about they go for an hour, and you agree where you’re going to meet, or they actually don’t go to that one but they go to the other one where adults are also invited, things like that. I think it’s allowing children and young people to grow up whilst also making sure you’re looking after them.

Rebecca, what did you do after finishing school?

I actually went to Uni to study psychology.

At University, I ended up speaking to my tutor, and I had so many different things that I didn’t know- I’d be able to have rest breaks through exams, that meant that I could just pop out and have five minutes fresh air, or to take some paracetamol, or to have a drink or a biscuit. I could have my exams in a separate room. So that was really good, because then it was quieter, there were fewer distractions. I could use a laptop if I needed that, or I could have someone to read the questions out to me- all sorts of different support.

One of the most beneficial things for me at University was I had my exams at different times to other people (I’m not sure if this is possible in school though). I found that my fatigue is far worse in the afternoon. And I’m okay in the evenings and I’m okay in the mornings. But between about one and four, I find it really difficult. And I opened up to the staff and said- ‘this is what I find very hard’. And they said, ‘if you come and do your exam early, that’s absolutely fine’. And all I had to do was stay longer, because they couldn’t risk that I could leave the exam, having finished it and then go and tell everyone else what the questions were.

But I wouldn’t have known this if I hadn’t opened up to someone and it’s a really hard thing to do. It is really hard to say ‘I’m struggling’. It’s hard to admit that to people. But when I did, I think it made one of the biggest differences because nobody ever turned around to me and went, ‘what do you mean, you’re struggling?’ They all just went, ‘oh, we want to make this as easy for you as possible.’

If you’re comfortable doing so and you feel safe to do so, tell the people who are around you, who can help, even telling my friends and explaining to my friends that – ‘I actually get really tired these days, I really need a break’. Or ‘I’m going to come but I might only stay for half of it’, no one ever had a problem with it. So many people have been fine with it, that if one person wasn’t fine with that, I was like, ‘not sure you’re the person that I want to be spending more time with’.

When I went into Uni, I picked courses and subjects that meant that I did more coursework than exams- because I find memory really hard, I find exams really hard. So I knew that I could find something that would work for me.

I lived in what they call University halls, so halls of residence, which are like flats. They’re owned by the University and they have a reception and they look after you a bit more- they help you pay your bills, and they look after, the rubbish and the maintenance, you’ve not got to call a landlord or anything like that, they just do it for you. And I actually lived there for four years, I lived there the whole time I went to university, because that took away the pressure of needing to worry. And my parents didn’t have to worry because there was someone 24/7 at reception. So if I needed someone, I could just ring reception, and they would help, there was someone on hand. And it’s little things like that, that I found in my adult life, I can do the same thing. I can live in a complex of flats, which has a 24/7 concierge, and it’s exactly the same.

Diet and Fatigue…

I find if I eat the wrong things- if I eat a lot of sugar, (I don’t know if that’s scientific!) but if I eat a lot of sugar or rubbish foods, like if we have a takeaway, I’ve noticed I don’t really function as well. Or if I continually don’t eat at good times, like I don’t have regular meal times, or I’m going to bed really late. That makes a massive difference to my memory and fatigue.

Final thoughts…

Sometimes I do also get memories, or things will happen in my day which make me think of my brain tumour, my diagnosis or my hydrocephalus, and I’ll have a moment and be a bit sad and feel a bit gloomy about that.

So sometimes it’s not that my actual fatigue and my memory in terms of what I’m trying to remember has gone, but sometimes it’s that actually that I have memories I don’t really want to be thinking about.

I did go to counselling for a few years, I think that was really, really good. I didn’t go straight after my diagnosis, it was years after my diagnosis that I thought- you know what? I never really talk about it/I’ve never really spoken about it- but look at me now!

I’d always kind of kept it to myself, and then I realised that I needed to start telling people when I was struggling, I realised actually, it was really helpful to go and talk to someone. And what did they say to me? They said, everything you’re feeling is completely normal.

Thank you so much for inviting me Lisa, It’s so nice to come and be able to meet some of our teens and to share my experience, and hear some of yours, and join this community, which is lovely!