Interview 13

Age at interview: 24

Age at diagnosis: 17

Brief Outline: Diagnosed with osteosarcoma in 1997. Treatment: six months chemotherapy; surgery to remove the tumour and have a metal knee put in and a lengthy period of physiotherapy. Cured.

Background: Solicitor. Since her knee replacement has carried on ski-ing and horse-riding and ran the Race for Life in 2000. Fills her spare time with lots of swimming, cycling, yoga and walks in the countryside.

Didn't realise that what she had was cancer until just before starting her chemotherapy.

I went to hospital and they took a biopsy of the lump and then I went back again and they said 'You've got an osteosarcoma,' and explained that I was going to have to have chemotherapy, how long it was going to take and things like that. 

And I went back home and called my best friend. I remember so vividly saying "I've got to have chemotherapy. It's fine, it's not cancer, but I've got to have chemotherapy and so I'm going to go in to hospital quite soon".

But it was only when I got there that I actually realised that I'd got cancer. Someone said 'Now, you do understand why you're here and what's wrong with you don't you?' And I said 'Oh yes, of course I do.' But it was only having seen the signs saying "Cancer ward" in the hospital that I'd realised.

Neither you nor your mum realised it was cancer?

She may well have done, I'm not really sure. In my head it was different to have to have chemotherapy as opposed to having cancer, which now I realise was completely daft. But at the time I hadn't realised that it must have meant the same thing. And it's such a buzz-word, "cancer"; it's something that happens to other people. Everything in my life was so perfect and I just couldn't believe that this was happening to me.

And so I think probably Mum did realise but it was, it think it was such a big thing anyhow, having to have the chemotherapy and they'd explained I was going to lose my hair and things that I don't think she really knew that I didn't understand that it was cancer. And then also because when they said when I went to start the chemotherapy 'Oh yes of course I understood that,' I kind of tried to cover it up because I felt so silly, then again I don't think she really realised until you know until more recently that I said 'Gosh no, I didn't really realise,' I think it was only then that she knew.

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

Was terrified when told by junior doctors about possible complications of her surgery and really...

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 we'd 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 adked to see the surgeon, who said 'Oh for heaven's sake, we have done this operation thousands of times, we'll 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.)

She felt too tired to find information about her treatment but her mother asked lots questions...

And in relation to finding information did you make any effort to read about what you were having, the treatment, the type of cancer you had?

I didn't at all. I don't know if Mum did. Certainly she asked a lots of questions and describes herself as the Mother from Hell for the doctors. She was always the one that was making sure that I was having the best possible treatments.

They had a trial going on when I first started my chemo that looked at giving it more intensively over a shorter period. We decided that I would take part in the trial but you were randomly assigned to either the short or long course and I actually ended up on the course that had been established for a while, with the longer periods in between sessions. 

Mum was always making sure she knew exactly what was going on and why they were doing things whereas I was just too tired to be honest' I just didn't have the energy to ask questions. And, I suppose, I kind of felt that Mum was doing that bit, the doctors are doing their bit and I should concentrate on just getting through it all.

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

She felt terrified when told by junior doctors about possible complications of her surgery and...

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 we'd 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, we'll 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.)

Despite been told two years ago that she is cured, she still feels scared sometimes that the...

I think five years after the treatment finishes is the real cut off. I remember going for a check-up and the doctor saying' 'Right, that's five years, you're cured'. It was amazing. I had just never thought I would hear those words. The doctors had always seemed to be trying to cover themselves and just to hear those words was absolutely incredible.
 
From five years the check-ups become much less frequent. They are every couple of months to start with, then every four months, six months and now once a year.
 
A while ago I was having a bit of a down day. I always think that exercise is a great way to make myself feel better but on that day I just did too much. I went for a long run and a lump came up on my knee. Logically I knew that it couldn't be cancer because it had come up too fast but I was just so, so scared.
 
Anyway, I went and had an X-ray and my surgeon had a look and said that I'd probably just done too much and that the tendon capsule had inflamed but that it wasn't cancer. It was then that I mentioned for the first time that I still sometimes feel worried that it would come back and get a bit tearful and how silly I feel because it all happened such a long time ago. My
surgeon said that it was completely normal and that lots of people feel exactly the same and it meant so much to me knowing that I wasn't being stupid feeling like that.
 
Of course life goes on but those feelings are still there and you just have to get used to dealing with them. You can always talk to friends and family and such but I think it's really important to realise that there are other people out there feeling those same scared feelings and that that just doesn't go away overnight; it's always there at the back of your mind.
 
But then those experiences also mean that you have a real appreciation of how wonderful it is to have a normal life again.
 
Okay, so it's something that you have to learn to live with?
 
Yes. And learn to accept that the worry is always there and it is a bit scary but that you shouldn't try to hide from those feelings. But at the same time, you have to get on with life because it's crazy to spend all of your life worrying rather than getting on with enjoying it.

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

Her mother helped her to see her situation as a fight that she was going to win.

I remember waking up one night (I think it was just before my last course of chemo started) and thinking 'If this doesn't work, I don't know if I could do it again' and being really worries that I simply didn't have the strength to do it again. That was a really low time.
 
But Mum said that I was going to be okay and get through it and to remember that the doctors had said it was going to be fine. I realised that I had to believe I was going to be okay and that if I did have to have more treatment in the future, deal with it then.
 
So you were reassured by the doctors?
 
Yes. Although, I think more by Mum really. The doctors always talked in percentages, which was quite scary really because if they said 90% will be fine, I worried about the other 10%. But Mum managed to frame things in a much more positive light and kept saying that I was a fighter and was going to be okay. And I believed her and just went for it.
 
Did you see it as a fight?
 
A bit, yes. There was this thing and it was me against it and I was jolly well going to win!
 
Because psychology is quite a powerful weapon?
 
Yes. I was aware just from television programmes and articles and things that people say how important your mental attitude is. I think I have always been quite determined and quite stubborn and was determined that I was going to win.

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

Found it more difficult to cope with the 'pity' expressed by others than she did with her hair...

I think it was mainly coping with other people's reactions that I found hard. It was almost like the physical changes were happening to another me; I didn't really compare myself to how I used to look. I was ridiculously skinny and looked ever so peculiar with my funny little hats on all the time. And it was quite strange because whilst in winter you could go out shopping and things and people wouldn't think anything of it, when it was warmer and I went into a shop in my hat people did give me really funny looks. I really wanted to say 'Look, I'm not crazy ' it's because I haven't got any hair under there!'
 
So it was quite hard going out in public to begin with and I didn't want to go out by myself. But I think the main thing was that I didn't want to have to cope with people's pity and didn't want to have to keep saying 'I'm alright, and I'm still me, you can have a normal conversation with me'. And with less good friends, I think they felt they should hide the good times they were having and not tell me about what was going on at school and things. That was why it was so good talking to my best friend ' she was great and would fill me in on all the mundane things that were going on.
 
I think at that age you're very competitive and it was hard seeing my peers going off to university while I had had to put my life on hold for a bit. I didn't want to deal with that and I didn't want to deal with their pity' I just wanted to disappear and concentrate on getting better and then go back when I was well again.

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

Says that she doesn't feel worried or embarrassed about her scars.

Do you have a scar on your knee?
 
Yes. It's a very fine scar but quite long. I suppose nearly 2 feet long. It's amazing really how small the scar is when you think about what they had to do.
 
Does it worry you cosmetically?
 
Not really, no. I still wear short skirts and things. Actually, for the first party I went to after I had been ill I wore a dress so short I feel quite embarrassed thinking about it now!
 
I don't wear thick tights or anything to cover up my scar; it has never really bothered me. I refer to it as my Shark Bite scar. I've also got a scar from my Hickman line and I do try to find bikini tops that cover that up.

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

Says that you have to try to stay positive and feels that the experience of having cancer has...

I think it's really important to stay strong and positive and focus on getting through it and on how great life is going to be afterwards. But as I said before, I think it's also really important to acknowledge that it's a really scary time and not feel that it's stupid to be scared. Talk to people that you feel comfortable to' don't bottle it up.
 
And just acknowledge that it is hard but that other people are going through it too and that there are other people that you can talk to. Talk to your friends, talk to family, talk to the doctors because they've seen so many people who've been through the same thing, and talk to patients that are better not just ones that are ill. And don't feel different or stupid because you're scared because it is scary but stay positive because life goes on afterwards and it's just so important to focus on that.
 
Oh, and to enjoy the new perspective it brings to your life. Enjoy that it makes you look at really normal things and think 'Gosh this is brilliant!' and just the feelings of just loving everyday life that you gain from it from having had a scary experience. 

And so yes stay positive but acknowledge that it's scary as well I think.

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

Thinks it's really important that doctors are aware of how much their attitudes affect patients.

When I first went to hospital to start my chemo, the oncology doctors were really negative about my prognosis. I imagine being surrounded by so many poorly people everyday must make you feel negative but I do feel that it's really important for them to be positive and remember that people do get better. I felt that I was fighting not only the cancer but also this negative attitude.
 
But the surgeons are, I suppose, doing something very positive. They are physically taking away the cancer and giving you a new knee or whatever. Certainly the surgery people were very positive. On the flip side though, because the oncology people had had such a tendency to be negative it made it even more incredible when they finally said that I was cured.
 
So you think that doctors dealing with young people need to be aware of how powerful their attitude can be?
 
Yes. Because everyone is terribly sensitive and will tend to assume the worst anyway. I used to think 'well, if they're saying that and sounding quite concerned it's probably really bad'. Probably they are giving you the worst case scenario because that's what they have to do but you kind of double the probabilities they give you when they sound worried as well. That's why I think it's really important that doctors are positive.