So the following morning I got up and they prepared me for surgery. I was really scared, really crying. The doctor came to see me, he was very you know offhand, he, he wasn’t actually much older than me [laughs] which is what I found a bit scary [laughs]. I thought, you’ve probably only just qualified and you know, you’re, you’re, you’re going to cut me open. But he, he said, ‘Oh it’s ok, it’s only going to be a very short 20 minute operation, just knock you out, put a little slit in your neck, get a piece of the lymph gland tissue, and then well be able to see whether it’s lymphoma and what type of lymphoma. So reluctantly I got on the trolley and was wheeled off and one thing that I remember, and it’s so weird, was that the porter actually got confused and took me to the labour ward, the labour theatre, and I remember ‘cos I went to hospital my, my mum was in hospital having my sister for quite a few weeks so I know the hospital and all the maternity wards well. And I just remember thinking, I’m sure this is the maternity unit, so that was something that stuck in my mind. But he finally got me to the right theatre where there was a whole team, probably about eight, eight doctors and nurses in the theatre and that, that they just basically I just remember looking round and them all having their hats on and their gowns and everything. And then I was just knocked out with a general anaesthetic which I, I’d never had one before so, so that was that or so I thought.

But the first thing I knew was just waking up and having all these tubes. I had a feeding tube in my mouth, I had a catheter, I just had all, all kinds of things. But I had a really nice Australian doctor, this, this young man who very quickly took a lot of the tubes away and, ‘cos I, I was trying to get out of bed, I was trying to go to the toilet, I didn’t realise how ill I was and you know, he soon realised that I wasn’t actually going to sit there for much longer. So over the next couple of days pretty much all, all the tubes were removed. I particularly remember the feeding tube being removed which was pretty horrendous. Luckily he didn’t tell me how long it was before he started to rip it out, ‘cos it was like a big snake being pulled out of my stomach. But at least that meant I could eat, so, so that was good. I started off eating some ice cream again, just to get me used to food.

At the time I was, I’d been with my boyfriend for four years, and he stayed with me overnight in this intensive care ward ‘cos I was really scared. And I just remember him being asleep in the chair and me just sitting upright in this bed just thinking, oh you’re supposed to be awake trying to keep me company. I was just really scared in, in there. Eventually like I was in Intensive Care for two days and then they moved me to a ward still in, [place] where I was for another night.

They explained to you why they were giving you the chemotherapy before surgery?

Yes. To make the operation easier and to mop up any cancer cells that were travelling about in my body. When I went into hospital for the surgery, actually it was a brilliant time in a way because the chemo stopped. It was amazing how fast I felt better!

I went into the hospital for a discussion with the anaesthetist etc the night before the operation. And one of the doctors said ‘Well you know there are a couple of things that could go wrong. We could sever through one of the nerves and then you’d have to have a brace forever or we could go through an artery and then wed have to amputate your leg. We were absolutely terrified.

And it was so silly; we should have said something. Another boy who had cancer in the same place and was in hospital at the same time asked to see the surgeon, who said ‘Oh for heaven’s sake, we have done this operation thousands of times, well just have to say that. I so, so wish that we had asked to see the surgeon who was going to do this operation and knew all about it and been reassured too. That’s is a bit of a regret.

(The text has been altered in accordance with the wishes of Interview 13.)

Mother’So that, because of how unstable he was and then they took him down for an emergency scan and that’s when they found out that his shunt had failed the, the –

Son’Valve.

Mother’- valve in his shunt. At first they thought there could be problems with the whole shunt in which case they said when they got the scan they might have to replace the whole thing but as it turned out they were able just to replace the valve so that he didn’t have to have the two, like two operations with the incision and everything.

So the fluid was not going through to the stomach?

Mother’It wasn’t going through to the stomach so he was, he, also as well because hed been vomiting he hadn’t been keeping any of his medication down so the, all the other hormonal things then were going haywire as well so that’s why he, the deterioration was so rapid. Because we, we didn’t know about the hydrocortisone, because they were able, obviously they knew when he got to hospital they gave him an intravenous hydrocortisone injection so that it got in to his system. Again, again his body didn’t handle the stress so fighting illness or anything going on in his body where our bodies immediately theres something wrong with them your body kicks in with that hormone, [son]’s body wasn’t doing that and because he don’t, taken his dosage in the night and he vomited he obviously had none in his system to fight whatever it was that was going on.

And the shunt has been there for how long?

Mother’The shunt has been there now since, well since that first operation.

Son’May ’99, well May ’98.

Mother’May ’98 he had the shunt fitted the first time and then it, they, they revised the-

Son’Valve.

Mother’- shunt, the valve then in November ’99 and since then touchwood.

Son’No troubles at all.

Mother’- theres been no problems at all. Because prior to him having this crisis they had talked about possibly removing –

Son’The shunt yeah.

Mother’- the shunt and after this hes ‘No way, you leave it where it is.

Son’Yeah.

Mother’Because we, we really weren’t sure whether it was a good thing or a bad thing but we thought well why remove it if it, if it was working fine before.

Son’It was doing its job.

Mother’But they said its just one of those things that can happen that because they, when they put the shunt in they made allowance for the fact that he probably would do a lot of growing and so they allowed for it going in to adulthood anyway so touch wood there should be no more problems.

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.

So I went for an ultrasound scan and this was this would have been about six weeks after my nineteenth birthday so I went for a, the ultrasound scan and then that evening after I had the scan the Doctor, my GP called at the house to say that they’d found a large ovarian cyst or what they thought was a cyst and it was about the size of a small melon, and so because of the size they’d have to operate and remove it ‘cos it was sort of over a certain size so, then I went and was referred to a Surgeon at the hospital, a Consultant Surgeon for Gynaecology, so I was referred to him and then sort of literally a couple of days later I was going in for my surgery and before that they did blood tests to check something called the CA125 which is like a marker of any disturbance in, in the Gynae kind of region.

And also did an ultrasound scan and discovered that I had a cyst or what appeared to be a cyst on my other ovary as well. So the Surgeon explained to me that they would have to remove one of my ovaries, so I signed permission for him to do that and that they would just drain the cyst on the other of my ovaries, so I went into for surgery on Wednesday the, I think it was a Wednesday, the sixteenth of August 2000 and when they started the surgery it sort of become apparent that it was more complicated than they had expected [laughs].

And they took a frozen section out and diagnosed that it was Ovarian Cancer so, they, so they removed and they had to contact my Mum and ask her for permission to remove both of my ovaries ‘cos you have to give signed permission, so whilst I was still in surgery they contacted her and explained the situation. I also needed a re-section of my small bowel ‘cos the, the Cancer had kind of stuck to the bowel and that’s why I had the symptoms of Irritable Bowel Syndrome because my bowel had been obstructed by the tumour. Which is also why I’d had the, the vomiting, and the pain, and that sort thing ‘cos it eventually, the bowel had been sort of squashed so it, it couldn’t, it couldn’t, no longer work so they asked her if they could do a bladder re-section, a bowel re-section and remove both my ovaries, so, I think she made the right decision [laughs] and said, ‘Yes. So they went ahead and finished off the surgery, so I was, I think I was about seven hours in surgery in the end. And then, yeah, and then I sort of, I mean I woke up and I was so very, because I had no idea, I thought I was going in just to have a, ovarian cyst removed so, so I sort of didn’t wake up expecting anything or worried about anything really, I was just aware that I was very drowsy and obviously had a lot of morphine on board so it was all a bit, bit, bit blurry but I also had a feeling, because they’d explained to me that if things were more complicated, then they’d have to do incisions both, both ways, a bikini line and an incision from my belly button down and they explained that if it was more complicated they’d have to do that and I therefore have a, a epidural with morphine. So and I was kind of aware that I had that so I was sort of, knew some must be a bit, a bit wrong. So and I was kind of aware that I had that so I was sort of, knew some must be a bit, a bit wrong. But, but I sort of felt alright, the first night was very tough ‘cos I felt so ill, [laughs] and I overheard a nurse talking on the phone and asking for help, because she couldn’t look after me on her own. So that was quite frightening, but I was still sort of I thought I was okay so it was fine.

I was very, very uncomfortable, very uncomfortable. And this time we went into the hospital and someone had a feel about my stomach and then the surgeon was called down, well we didn’t know he was the surgeon at the time but a higher doctor was called down to have a feel of my stomach and he straight away said, then I was sent for an emergency CT scan.

Now we had a CT scan and they identified an actual blockage in my bowel, an obstruction is the exact word they used and they said, Were going to have to go in with surgery to, to remove that obstruction. By this point they potentially had a better idea of what it was but they called it, Just an obstruction, what they say, we went in with surgery and it ended up being a five hour operation I think it was and then,

What did they do exactly to remove the blockage?

Yeah is yeah so they ended up removing half my bowel, so I underwent a hemi-colectomy fortunately I didn’t need a, I think it’s a stoma bag is it? Sometimes when you have bowel surgery

You didn’t have to have a stoma,

No yeah, I didn’t have to have a stoma or anything like that.

They just joined up the two ends.

Yeah they managed to join it up perfectly which was good for me, so I managed to do that. And then the surgeon after the, the operation said, We had to remove half the bowel, what we removed looked ugly was the term he used. Weve sent it off to the lab, results will be back soon. And then by this point he pretty much knew it was cancer.

So how long was the treatment?

It was three months of the initial chemo, and then, then it went well. I think they reduced in size by about half, maybe even more. So they thought, right, let’s get whatever’s left out. So they did an operation, a big operation on my lungs. That was quite harsh. I spent ten days in hospital for that trying to recover from it. Yeah, it was really harsh, that operation’

Yeah? Do you want to talk a little bit more about that?

Yeah, I can do. It was a bit further away. They couldn’t do it in the hospital I was in, so I had to travel for it. My parents and my sister came up with me. They managed to stay in one of the CLIC houses, because I was still quite young and being done with the children’s side of things. Yeah, went up in the morning, and then in the afternoon had the operation. I think it was seven or eight hours. Didn’t go onto intensive care like they thought, which was good, so just went back onto a normal ward, which was great. Before I went in the one thing I was worried about was how much they would have to take out, you know, around the areas, because I was, you know, really sporty and into my fitness and everything. I was just wondering about my chest – my lung capacity. I didn’t want to be out of breath all the time. You know I think it’s quite natural. They weren’t entirely sure how much they’d have to take out, but after the operation it wasn’t too much. I didn’t notice too much at all. So that was good. The next few days I was pretty out of it. Just on the painkillers, and morphine and drugs and everything. The only thing I noticed for pain was just my shoulders, because on the table they had your shoulders right up, and it was just aching for that, being like that for seven hours, but I couldn’t feel anything else, so it was okay. And then after about three days, started to feel a bit more – you’ve got drains coming out of your lungs and a few other tubes going in different places, but that was a bit annoying though. You just want to get over it and get home, but you’ve got to stay in hospital. I think I had a bit of air on top of one of the lungs and they wanted to keep an eye on me for that. While I was there they got the results of the pathology, I think it’s called [laughs]. It said it was all dead, what they found, which was great. So they were really pleased about it and then decided on the next treatment, so went on from there.

What happened with after they, they removed the lump?

Well, I started getting lumps pop up on the right side of my neck which hadn’t happened before. They’d all been very much contained on the left side between just literally my neck and my shoulder, it hadn’t gone anywhere else. So I started feeling lumps on my right side and then, they were taken out and were positive, so they decided to do the same operation that they’d done on the left side of my neck, on the right side. So I had all the glands taken out on the right side of my neck, which I actually found out the other day was 67 glands, which is quite a lot I think [laughs]. I didn’t realise we had quite so many glands so that was quite funny.

How long that operation lasted?

I think that was about three hours long. I was in for four days maybe five days this time. I didn’t stay as long as I did the first time I was in [place] so my friends came up and visited me which was a big help because obviously in [place] they all called and, and sent cards and stuff but it, theres nothing nicer than friends coming over and you kind of laugh and giggle and kind of forget that you’re in hospital and you’ve got drips and stuff up. It was, it was really, it was really nice. That was the beginning of sixth form, the beginning of my A levels. And my head of sixth form came to visit me as well which was lovely. She brought some flowers. And, and so I kind of, I had a better experience of that one. I, I knew the drill a bit, I knew how I was going to feel afterwards, I knew what painkillers to ask for and it was, it was an all round better experience just because I had more. My brothers and sis, my brother and sister could come and see me which they couldn’t really do in [place] ‘cos it was too much of a journey just to come up for a day and then go back again. So that was just really lovely I, you know, I kind of felt supported and loved and that was, that was fine.

Recovery-wise it kind of got easier the more operations I had. Because to begin with the anaesthetic was making me feel very sick, so then I knew to ask for anti-sickness so when I’d come to I, I’d feel better. I’d feel in pain maybe but I wouldn’t feel sick which has always been quite a big problem. I had the odd bit of physiotherapy for my shoulder because obviously they took a, a part or a whole muscle out.

So how long were you in hospital during that time?

During that time

After surgery.

I was in hospital for six days I think.

And what were your experiences, we quite like to hear peoples experiences of being in hospital.

It was, I was, yeah because of my age I was sent back to a kind of children’s ward, I was 15 at the time, and obviously they’re not used to children in this hospital that I was at then, used to children having such big operations, it was only a relatively small hospital and it wasn’t a specialist children’s hospital. So they weren’t really used to children having such big operations. So as a result I kind of got lots of attention, lots of care almost if that makes sense. And the communication then was quite good actually, but it was kind of like I think they knew, the hospital knew they kind of made mistakes with my diagnosis so everyone was trying to perhaps rectify that a bit. But my experience after the surgery was, was okay.

So how long did you have then, that you went back home again? How was the post-operative recovery?

Yeah a normal person who has an operation, I was told takes about six weeks off work or something like that. Within two I was starting to go back into school,

Oh.

just starting to do stuff so I was very keen not to let things keep me down. I probably pushed myself a bit too hard, I always do. But I was out there, I was trying to do what I could which is my way of dealing with things so,

So you didn’t have a long time off school really?

No. No I had I started going in just like, I don’t know a lesson or two and then crept it up to half days and before I knew it I was just back and doing, doing full days like I could. I was still getting rest at home and sleeping when I needed it.

What about when you came home? Did the GP come and visit you? Or did you get any follow up from local doctors?

I don’t really think so I think we regularly went to the GP’s just to see the nurse just to get the dressing changed and to make sure it was okay and then I think it was after a certain amount of time we had to have the stitches out, so it was, we were in contact then.

So that all went alright?

Making sure the wound was looking okay. But yeah fortunately I had no infections anything like that. The recovery of the wound itself was absolutely perfect.