Interview 02

Age at interview: 16

Age at diagnosis: 14

Brief Outline: Diagnosed in 2001 with a brain tumour (germinoma); surgeries: third ventriclostomy, two shunts and a replacement valve; 25 sessions of radiotherapy and physiotherapy. In remission, no medication.

Background: Student; lives with parents and siblings. Has helped to produce a leaflet to give tips to other young people undergoing radiotherapy. White British.

Describes what happened at his radiotherapy session.

I had radiotherapy for five weeks. And it involved just laying on a table with this machine that goes, comes over you and because my tumour was in my head it came down to both sides and I had three bursts of rays. One, the ray on top was more intense than the ones on the side and I had a mask made for the, to get the laser in the right place where they put the lines all over.

Okay, where was the tumour located?

It was in the middle of my head.

And you had to wear that mask?

I, I had a mask making session where they made the mask with plaster of Paris and they made a mask out of that, and then I went for planning where I had to wear the mask for like two hours, on the table where they planned all the lines where they were going to put the rays in to kill the tumour.

So and for, you had to wear that mask?

Every time I went for radiotherapy. I had to lay down face first.

Lay down face?

Lay down face first, I was like that.

Okay.

On the table.

And how often during the week?

Every day except for weekends for five weeks.

About going for radiotherapy? No because all the nurses there explained what was gonna happen and they were with me all through the stages like they were there when you're getting on the table and they said 'are you okay?' and then they left, because they can't be in the room while you're having the radiotherapy. And they could watch on the camera so if you need any help you put your hand up and they would stop and come in. So you've got someone there all the time if you need some help. Just don't be afraid to ask.

So you had the support you needed.

And for how long was the session?

I, it took I think about an hour maybe, no about 20 minutes I was actually on having radiotherapy because they had to line me up but the actual like when they were zapping the tumour took like a couple of minutes.  

I see.

Just for three bursts so its just aligning you and getting it in the right place, that takes the time.

Just a few days before collapsing he experienced balance problems, said that the sensation was...

I was out with my friend on the 9th of September 2001 and I collapsed on my micro-scooter going down a hill, blacked out and I was taken to hospital by ambulance where I found out I had a brain tumour and they contacted Hospital, oh, okay. And they took me there and they did some tests on me to find out what sort and I was rushed in to have a, in to theatre to have a outside drain.

Well I had an emergency drain put in to drain the fluid off my brain so. And then I was, it's written down. I've gone blank. I was gradually turned off the life support.

Did you notice anything before collapsing? 

No. I didn't.

Did you feel ill in any, in any way?

No, the only, looking back on it I have only the symptom, I was walking to school and I was like drunk, I was like going all over the place, falling off the curb. It was just like acting a bit.

How long before?

It was the day before, two days.

Okay so it was very sudden?

Sudden yeah.

Gives tips to other young people starting radiotherapy.

Okay tell us, tell us about your tips?

Right. Relax while you're having radiotherapy, just watch telly, chill out and sleep as much as you want. Just enjoy it. 

Instead of using your normal shampoo on your head when you're having radiotherapy use baby shampoo like Johnson's Baby because its gentle and delicate for your thing, it doesn't infect it or.

Ask for anti-sickness tablets off the radiotherapy staff because you feel sick during it and if you take them you won't.

I don't want to read that one. 

Drink ginger beer if you feel sick. Someone said it helps.

Cut, cut your hair short to Grade 1 so people don't notice its fallen out so you, it just looks the same just shorter.

If you, there's a funny smell if you've got a brain tumour when the rays are going in so take something like Olbas Oil on a tissue and put it underneath your mask so you can sniff it and it makes the smell go away, but you can still smell it.

Get plenty of rest and sleep.

Talk things over with your family and friends so they know what's going on and don't feel left out.

Carry on as normal as well. Don't do anything like you wouldn't do or stop doing things.

Have a drink before treatment and have a drink after treatment because, because you get dehydrated.

Was wary when he had his first shunt put in but now feels more confident that he can live normally.

Can you explain a little bit why do you need to, to have the shunt in?

I have the shunt because my brain, the fluid around your brain builds up and it was giving me headaches, severe headaches so they put the shunt in to drain the fluid off and it goes down my neck, you can feel it, just there. And it goes in to my stomach and just drains it off and disperses in my stomach.

Hmm, no I live a normal life now, I can do everything I want to.

Okay.

But when I had my shunt before I was really wary about it because they said 'don't push the button' in this, I've got a bubble on the side of my head, they said 'don't push it in,' I was really scared about hitting it in case it does something to me but like this is my second shunt and I don't really worry about it, I was just scared of hitting my head against walls or something. But I just carry on as normal and don't really mind because like its there and I've gotta put up with it and just, they say you live a normal life so I do.

So you have learnt your lesson to?

Yeah don't worry about it because the doctors push it and nothing happens so if it, if you push it now and again its not gonna do anything.

So the first time you were really worried about it?

Yeah worried about hitting it.

And maybe that was also kind of holding you back?

It was holding me back from doing stuff I would normally do like, like because I didn't like people touching the side of my head and in the shower like going there, washing my hair and it just weird.

Okay. How long do you think it has taken you to build up that confidence?

Because after I had my first shunt and that blocked they put in a second one I just didn't really mind so after that I was fine.

Says that regular checkups and scans help to detect any new cancer cells that might build up in...

Or I've after radiotherapy I saw the doctors and they said, “You'll have a scan in,” an MRI “to check it's all gone.” And I had one of those and I have it every six weeks, six months now. I had one I don't know how many months ago to see if the tumour's gone because there can still be cells even though its, most of its gone that can build up again so I've had a scan just to check its not come back.

So you are having a scan every six months?

Yeah.

Okay. Can you tell me how you feel, sort of the day before you go and have a scan, are you apprehensive in any way?

Hmm, no because I've had two now and they have been all clear so, but I was feeling on my first scan a bit worried to see if it was there and I've got to go for another five weeks because I don't really want to.

Okay. Okay. Why you don't want to?

Just because its like putting, 'cos my mum works at home and she couldn't work and its just like the stress of going through it all again, you've done it once and you don't just want to do it again.

Says that everyone in the family was affected but particularly his mother who had to stop working...

What about the impact on the family and the others around you of you having a brain tumour, how did it affect the family?

It affected my Mum because she works at home and I was at home most of the time, she stopped working for all the time I was having radiotherapy so she could take me to the hospital and be there.

My Dad carried on all, as normal but he still went to work but like he phoned us regularly to see if I was okay and what we were doing. And my brother and sister went to school but they kept coming home and seeing if I was okay. 

Your brother and sister?

Yeah.

Okay, they were worried about you?

Yeah.

Did they ask questions?

Yeah they said, 'What's it like?' 'Why, why have you lost your hair?' You know like they were really nice because my brother's usually grumpy and he doesn't, we fight like now but he was really kind and he helped me, he brought me drinks if I wanted a drink. He changed.

Postponed going back to school until his hair grew back.

I was off school for the whole of year 10 basically, but I went back for the last couple of weeks, maybe months. 

And I found it like quite weird going back the first day like because you hadn't been there and everyone was like you didn't know if they were gonna be like friendly or if, what's happened if they've changed, if they know what's happened. But everyone was really okay. And all my friends were like interested what's happened. You had to explain, everything went on as normal.

Okay, so they were asking questions?

Yeah, asking questions to see what happened.

And at that time you had lost your hair or?

I no I was, during radiotherapy I didn't go back, I stayed at home during that, I didn't go back until it was grown back a bit because I didn't really want to go back without my hair. And I was a bit, I was scared really because I didn't want them saying 'why have you lost your hair?' and maybe people taking the mick. I was worried.

Okay.

Yeah.

So you waited?

Yeah for a while until I had like a Grade 1 or a Grade 2, because they said I would be okay if I had that because I was a special case.

Okay so that was your main reason for not going?

Going back as soon as I could.