Interview 19

Age at interview: 25

Age at diagnosis: 21

Brief Outline: She was diagnosed with Non Hodgkin's Lymphoma in 2001. Treatment chemotherapy. In October 2002 the tumour started to grow again. She was treated with radiotherapy. In remission.

Background: Lives with partner, works as a civil servant. Volunteer for the Lymphoma Association helping other young people who are going through the experience of cancer.

Prefers her six-monthly blood tests to her annual scan.

Everyone said, 'oh you've got a good chance, you're young and, you know, the treatment's really good.' But there's always that chance that, you know, I'm not stupid, I know that people die of it and that could be me and, I mean, even now I go to my appointments and the time in between I'm generally ok although I can honestly say that I think about it every single day still. In, you know, it might be something stupid that will make me think of it but I still think about it every single day. But when It's a couple of weeks before my appointment it all comes back to me and I, you know, the minute I walk though those hospital doors to go and see the doctor, the smell of the hospital and I just hate it. And the worst thing is when you go to the hospital you're shown into a room, when it's your turn to be seen you're shown into a room and you know that the doctors are the other side of the, the, the wall looking at your case before they come in to see you. And that's just really scary 'cos you know that they know if you're ok or not, and you've just got to sit there and, and kind of wait.

It's not so bad, it's not so bad when it's just a blood test, 'cos I only actually have a scan once a year, I have a blood test every six months. The blood test doesn't seem so bad 'cos I think.

So if you carry on talking about the blood tests?

Yeah, the blood test really weird but it seems to me that you can hide stuff in a blood test, which is ridiculous because I know that they, you can't hide things and they're going to do all the tests, but when it's a scan it's kind of, they can see all of your body and there's kind of no place for it to hide so I find the scans really scary, and when I'm having the scan it's really horrible 'cos I'm sat there and the doctors are, when they're performing the scan, I just really want to be In there with them looking at my body so I can see if there's anything which shouldn't be there. I mean, the only thing that isn't normal on my scans at the moment is that I've got scar tissue on my lungs where some of the radiotherapy did get through to my lung. 

Says that her GP could not make out what her symptoms were due to and suggested that she should...

So my dad actually insisted that he come with me to the doctor that day because I think my parents were a bit worried by this stage because I'd, it was some really strange things that was, that I had basically. We went to the GP, it was about, it was an afternoon appointment, it must have been about 5 O'clock and we told the GP all my symptoms, and he could see from my notes that I'd been to see two other GPs in the previous weeks and they'd just given me antibiotics. And he asked me to just take all my clothes off and stand behind the screen and he came to look at my body. Now he saw that I had these lesions mainly on my legs but he could also see that I'd actually been scratching my back so much that I had scratch marks like an animal, a wolf or something had attacked me with these big claw marks, which I've still got because they scarred unfortunately. And the doctor was baffled. He, he basically said, 'Well I, I don't know, I don't know what's wrong with you.' He was very offhand, he said, 'Well' he, he actually said to me, 'You can go to hospital for tests if you want.' Now I said, 'Well obviously I don't want to go to hospital.' Never been to hospital in my life, you know, for nothing so I was really scared. But we agreed that I'd go home that evening, and I'd go back in the morning and the doctor would ring the hospital first thing and they'd try and get me a bed in for some tests.

Describes how a doctor gave her a leaflet on lymphoma, and explained which bits were 'out of date...

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. And they said they were trying desperately to get me a bed in, but in, in, obviously until there was one free I had to stay put. While I was in the ward a very nice doctor came round, a cancer doctor, and just gave me a leaflet on lymphoma which was good because no one had still explained anything about it. All I knew was that it was just a cancer, no one had said, you know, if the survival rate was good, what the treatments were, anything like that. So that was really good. It was a bit out of date and she explained which bits were out of date and things like that, but at least I had something to read which I could then show my parents and my boyfriend so we were all a bit more in the picture. 

When she was on an adult's general ward the limited visiting hours was the major problem.

So obviously, I mean, especially my mother, she, she's been through it all with me but she was totally distraught. But we, we got in the car and made it to the other hospital, where I was taken to a big ward where people were recovering from surgery. So there'd be like people with that had, had their varicose veins done, old ladies that were having minor ops done, that sort of thing. But the bad thing about it was that because it was a, the ladies in there needed a lot of rest, the visiting was two till eight, which wasn't very good for my part because they'd just told me that I'd probably got cancer and then I'm not allowed any visitors so I've just got to sit there on my own and cry basically. So we got to the hospital, my parents stayed with me for a few hours and we were told that it would actually be the following day, on a Saturday, when they would do the biopsy. So eight O'clock my parents got kicked out of the ward, and I just had to sit there on my own [slight laugh] which, I mean, looking back, if, if now, obviously 'cos I've got my strength I would have just, you know, kicked up a fuss but at the time you, you, you just your mind's not with you, you just, you know sort of go along with it do what you're told.

Describes how her skin peeled off under her arms when she was receiving extensive radiotherapy on...

So I was really angry at this stage because I'd got this dream job and thought I, everything was going ok, and then obviously had to go back to hospital. So I went in that day to find out that, I mean, they wanted, they wanted, they didn't want to see me that day, they wanted to wait three days before I could go in but I insisted. I wasn't going to sit there for three days not knowing, so I went in and they told me that the tumour had started to grow again, only, only by a centimetre, but it was still a centimetre more than they were happy with. So I had to start a four week course of radiotherapy so they told, they said to me, 'Oh, it's going to be a breeze, you've had chemotherapy it's going to be fine, it's going to be easy.' So I thought, well you know, they must know they're the doctors not me. So the next about, the next sort of week I had to go for various appointments where they measured my body, they, they had to make shields for my lungs and for my mouth so that the radioactive cells didn't get into my lungs or into my mouth at all. And then the following week I, I had actually booked to go on holiday, would you believe, so I managed to escape it for a week and I had a lovely time in Cyprus on holiday, and came back and it was all systems go then. I had to have chemotherapy every day for four weeks, not at the weekends just in the week

Radiotherapy?

Yeah, sorry did I say chemotherapy? Sorry, radiotherapy and it started off fine, used to go in just literally lie on a bed, be zapped, would take about ten minutes sometimes longer because they needed to get your body in position so that they get the rays in exactly the right place every time. Towards the end sort of the last week and a half it was absolute hell. All my skin peeled off from under my arms 'cos they did, they gave me the radiotherapy from the basically from the top part of my stomach to my mouth. So I had raw armpits that were bleeding and all the skin on my neck came off as well and my mouth was really dry and I couldn't eat properly because it I could literally feel it burning in my chest. And I remember I, I still, I was still trying to go to work throughout this 'cos I thought, you know, it's going to take my mind off things if I can go into work for a few hours and I remember sitting there at work one day and literally feel the tumour shrink and it was literally it's like, I mean at the time I didn't know what it was it was like having a heart attack or something. It was like something was pressing in my chest so that was a really bad time. But I, I got through it, finished the course of radiotherapy. About a week later all my skin started to heal and about two months later I started to wear deodorant again, which is one thing I never ever thought I'd do because if you could have seen how red raw my armpits were, I couldn't have imagined anything worse than putting perfumed, you know, products on, on it. But, but it, but it did go, it did clear up. I'm still actually on tablets for indigestion because I get very bad burning when I eat, which is caused by the radiotherapy. But scans have showed since then that it's, it's ok. Again, it's still slightly out of shape but I mean this is a couple of years on now and so far so good. I'm at six monthly appointments and everything is looking good.

Describes being scared before the operation on her neck and waking up to find she had a feeding...

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 we'll 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.

She had a scan to assess the success of her chemotherapy. She was told that one tumour has completely disappeared and the other has significantly shrunk.

The next the next hurdle was a doctor's appointment at the hospital in three weeks time where they would do a scan and tell me how the chemotherapy had done. Now during this time obviously because I'd never had anything like that before, you're really hoping that you're going to go along and they're going to say, 'Yeah, you're fine' and then you're never going to have to go back again which, looking back, is you know, is probably never going to be the case but that was my hope anyway. So for the next three weeks I tried to sort of remain positive and things like that. Went to have the scan, went to the doctor's the week later for the results and it wasn't the news I'd been hoping for, although it wasn't bad news either which was kind of bad in a way 'cos it left me in limbo. Because what she said was the tumour under my arm had completely disappeared and the one in my chest had significantly shrunk, but it wasn't back to normal, but it might not ever be normal. So it was this whole kind of wait and watch type scenario where I just go back to hospital every three months and they monitor me and if it started to grow again they'd obviously act on it. If not it might just be that it would, my lymph node in my chest would always remain slightly out of shape because it had grown so large. So that was a bit of a blow really, it was, I just wanted all the treatment out of the way and dealt with so I could just get back on with my life. But, you know, it, it's just, it was good, it was good news 'cos I could, I, in the end I just decided that I just had to get on with things.

Was proud of her very long, blonde hair and did not shave her head until her hair started to fall...

One of the things that was really bad from my point of view was the doctor told me that I would definitely on, on this particular regime of drugs, I would definitely lose my hair. I had blond hair right down to my bum, and I, it was really nice I really liked it, everyone else really liked it, everyone used to comment on it and it was, you know, it was my crowning glory really. So I was really, really upset about that and I remember thinking, 'cos some of the nurses were very nice you know, and they said, 'Oh, maybe you know, you, you'll be better off shaving it off now.' And I thought to myself, [laughing] you must be joking, I'm going to keep it to the very last minute that I can and things like that.

It wasn't till after my second dose of chemotherapy that my hair began to fall out, and it did literally happen overnight. One day it was fine, and the next day it was coming out in handfuls. So what I did was I had it cut to a bob, but this only lasted a couple of days, and then it was, it was just, I had bald patches. And I remember my parents took me out for lunch and I was really embarrassed because I went into the toilet and I had like a black top on, and you could see where all my hair had fallen out down my back. So against all my previous thoughts I did actually shave my hair off to a grade 1 which was really, really horrendous and my Mum hid upstairs and my Dad and my, 'cos I've got a younger sister, and they, they did it. And were trying to make a bit of a joke out of it you know to make me feel better. And I tried my wig on for the first time which was sort of shoulder length blond number with a fringe. Which I thought at first, oh my God it makes me look really funny but luckily my sister who's really good at doing hair, unlike myself, managed to style the wig and actually put a little clip in it so it actually looked less like a wig, I thought. So I got, I got used to the, to the wig and I always wore it whenever I went out. When I got in the house I'd usually sort of take it off and just wear a scarf or something. One thing that I do remember being really weird is the first couple of nights without hair, I've never been so cold. I mean, this was in sort of like February time but my head was, I had to get under the covers completely to be able to go to sleep 'cos I was so cold. So my boyfriend bought me, a sort of a baby's fleecy hat that I used to wear in bed at night to keep my head warm which, which I've still got because it kind of reminds me of, of that time but at least I could sleep then.

Knows that there is a chance that the chemotherapy treatment may have affected her fertility but...

One is regarding the question of fertility. Did they talk to you about it?

Yeah, they, they explained that basically it could reduce fertility but they didn't know because they didn't know how fertile I was before then. And it could cause early menopause but at the time I mean, you know, I was 21, it was kind of like the last thing that was on my mind. But it has been getting to me recently actually, as I've been getting older, it's kind of, we've had a couple of babies in the family and things like that and it is kind of beginning to get to me but I've mentioned it to the GP like a few times but, they're just pretty confident that, you know, things are, I'm still getting like periods and stuff, you know, I'm on the pill and just, pretty normal really. And that, unless I've been trying for a baby for a year they wouldn't even think about looking into things. And obviously I'm not at the moment so, you know, but you do still think about it, yeah definitely, definitely.

And how would you feel, I mean if the treatment has affected your chances?

Really like really, well I can't even describe but, yeah I really, I do really want a family so I would be really upset. But I think I'm going to try and, although obviously I know it's possible but I, just going to try and be positive, 'cos obviously there's loads of treatments and, you know, things for fertility and like donor eggs and stuff like that so there are options.