Interview 33

Age at interview: 33

Age at diagnosis: 20

Brief Outline: Hodgkin's lymphoma was diagnosed in 1993 after she noticed swollen glands in her neck following an infection she contracted while travelling abroad. Twelve sessions of chemotherapy put her into remission.

Background: Teacher, single, no children. Ethnic background: White British.

More about me...

Before starting university she had been travelling round the world and picked up salmonella and malaria and spent a short while in an isolation hospital. On arrival at university she presented herself to the unversity medical service and explained that she needed to get a stool sample to test her for paratyphi, which they did. But she also said that she still felt tired and had swollen glands even though several weeks had passed since her illness. The university doctor suggested she had glandular fever and told her to rest. But she was concerned that her glandular fever didn't seem as bad as in other people she knew who had had it. 

When she returned home for Christmas she had rows with her mother about whether or not she could go out with her friends because she seemed so ill. Eventually she agreed to see the local GP when the surgery reopened after the Christmas break. Two doctors examined her there, suspected that she didn't have glandular fever and requested blood tests and an x-ray. The doctors at the hospital suspected Hodgkin's lymphoma and took a bone marrow sample and a biopsy, which confirmed the diagnosis.

She had 12 sessions of ABVD chemotherapy administered via a Hickman line. Radiotherapy was also planned but was not given because her lymphoma had responded so well to the chemotherapy. She ended up missing the rest of the year of university and went back and repeated it the following year. She has been in remission ever since.
 

Received lots of cards and gifts, which made her feel loved and looked after.

And I know that it actually at the time it was very important, I mean it was like dealing with a crisis, you know, you do that, and a lot of people sent cards and presents and things, I mean the postman used to come round and every day, I mean I got to know him really quite well because he'd have all these things because it was of my generation of friends and my mum's friends I was the first person to get ill and it was quite shocking. And so I think another friend of mine said to me since, 'You know if it had happened ten years later it would have been a different experience, but because it was, I was the first, in a way, not that lots of people have got ill, but I think we got a massive response from people and it was brilliant and something I've learnt from that is to always say to someone or to send a card and say, 'just thinking of you, hope you're doing OK, just let me know what I can do'. 

Because it did make me feel so loved. And that was so important actually because it made me, I actually in that six months I felt like I was the best person because I could do nothing wrong, everyone was giving me all these wonderful kind of positive feelings, they would just come and look after me and do what I wanted. And I mean I never took advantage of it but I just felt like I was this kind of closeted but looked-after person. And in that sense again it was quite a positive thing and because I could ask for that sort of attention without feeling guilty I kind of felt, 'Oh God I've never realised how much you can get from everyone in this way'. 

When told she might have Hodgkin lymphoma and need chemotherapy she laughed in disbelief - the...

So anyway I'd made this appointment to go and see the haematology department at the hospital and I was like, 'Haematology? I don't know what that is? I don't know what that department is?' So my mum was back working and she was getting a bit nervous and I still hadn't gone back to university. So I went with a very old friend of ours who came with me to the hospital. And we went into the clinic and saw the registrar I think. He said, 'Well we've got these results', this was about four or five days after, so it was quite quick really and I think my GP had kind of rung them up and said, 'We think this might be Hodgkin's, can you sort of speed it up?' And we went in and sat down and I do remember this quite well, and I think you do with these things, with key things. 

And we sat down and I was with this old friend. And he said, 'Well we've looked, we thought it might be TB because you were in India, you might have picked TB up there, so we've had a good look at your lungs but we don't think it is TB.' And so they said, 'Well it could be, we're not quite sure but it could be Hodgkin's'. And I sort of said, 'What's that? I don't know what that is? I've never heard of it'. And I thought, when he said that I actually thought he, that was like Huntington's, which is that disease you get when you shake. And I was going' And I said, 'What's that?' And he said, 'Well we don't really want to go into what it is or isn't because we don't know definitely yet, we need to do some more tests'. 

But so my mum's friend said, 'Well can you tell us what sort of thing it is?' And he said, 'Oh it's a lymphoma.' And I said, 'Well what's that?' you know, 'I don't know what that is either.' And he said 'Well', and my mum's friend said, 'What sort of, what would that involve?' He said, 'Well it would mean you'd have chemotherapy.' And I burst out laughing because I was like, 'That's, you know, don't be ridiculous'. And the doctor looked at me and he said, 'It's not funny', and I mean I think you laugh partly because you're like nervous and I was like then felt like, 'Oh God, I'm getting into trouble now because I'm laughing'. But it was not quite real, but I didn't actually think it was that serious still, I think you do just. And I think part of me was kind of going into that thing of, 'Right OK whatever it is just tell me, bring it on and I'll deal with it as it comes.' 
 

Her three male friends shaved their heads with her and made a video of the process. She feels...

And for example when my hair started falling out, and of course I was twenty and I wasn't that, I'd never been that bothered about, I'd never been that worried about how I looked, I always thought, 'Well I look fine', you know, quite a lot there, so I rang up my friend and I was, these three boys, and I said, 'It's...' He said, 'Right', and this one particular friend who I'm still very close to, said, 'Right I'm coming round, I'm coming round this afternoon.' And he came round with this, with these other two and they said, 'Right,' and they brought with them a video camera and clippers, and we all shaved our hair off, and they videoed it and it was a joke. And it was, it was so funny and it was so good, and it was like, nothing's different. 

And I mean I was really pleased to, I have that, you know, and it was, and then they did it and they even did it like they shaved off the top bit first so we looked like monks, you know, I mean it was ridiculous. And if you think about it you think, 'God that's a bit distasteful', but it wasn't at all because I just thought, 'This is great'. And because my hair, and then I never had this half thin half thick thing because I did that quite early on once it started to fall out, I never had that thing where it's kind of like I'm disintegrating, because that's what it feels like, it feels like you're falling apart, and I thought, 'I'm not going to let myself feel like I'm falling apart'. So we did that and then it kind of thinned out, but what would happen is my main friend, he would come round and sort of shave off the bits that were growing so that it didn't look too manky. 

And I would wear hats sometimes but I would mainly just go out bald, and if people said, 'Oh what's wrong with you?' I'd say, 'I've got cancer.' And that would shut them up, and I'd be like, 'I don't care, you know, if you want to go and be so ridiculous.' And so the hair thing to me I was lucky because it didn't worry me. I think the stage I was at I didn't care, I was twenty, it's the sort of thing that people do when they're twenty, and the sort of people I knew would've, you know, weren't that bothered. But I was also lucky that I had friends like that who would do that with me really. And I did wear a scarf sometimes in the summer so I wouldn't get burnt and stuff, and I got lots of hats, people gave me lots of hats, and that was all quite funny. So that was, I mean that's an example of that kind of positive side of it. 

Got pregnant after treatment ended so knows she's not infertile; was not ready to have a child...

And as it turned out, afterwards I went to university and then I started going out with someone about a year or so later and got pregnant. But they had said to me, 'We don't think you should get pregnant within a year or three years of having treatment because of the chemotherapy and the effect it can have.' So I had an abortion, which I may well have done anyway, I don't know, but it was a good reason. And it wasn't, I sort of felt like that, you know, well at least now I can have kids, and also I don't have to, because it was quite, I was still young then, I was in the middle of my degree and I don't know really if I was, I don't know, prepared. And I don't have a problem with abortion so to me it was quite a straightforward decision. 

So in that way I was lucky, although I kind of sometimes think, 'Well what if I then am diagnosed with something else or it comes back and I could have had a kid and then I didn't?' You know, that does go through my head because I don't have them now and I would like to have them, so I mean that's more to do with, I don't know, finding someone nice to have them with. But it's, because I know that I can get pregnant it's not a worry, well until for other reasons if I don't have them as I get older. But it would have been, I think, if I didn't know that, I think I would be very worried. But yes that's that bit.

Found it hard to motivate herself for her last chemotherapy, then had to endure a difficult and...

The last month actually was the worst because I knew it was near the end, and it was like, 'I'm nearly there'. And it was harder, and going in was harder. 

I remember the last, almost the last treatment, every time we went to get the treatment I'd be like, 'Mum hurry up, hurry up we're going to be late', and the last treatment I remember thinking it was because my emotions were beginning to creep back in, I was thinking, 'I don't want to go'. And I'd never thought that before. I thought, 'I don't want to, it's going to make me feel really awful and I really don't want to feel like that, I hate it'. And I thought, 'I have to stop', and I was opening up a bit and I thought, 'Oh it's just one more'. And I went and obviously I did it, but then I was, the last month I was sick again, I was quite sick again, I think just because it was the build up over all the six months of time. 

And that was quite interesting to me. So and I then after I had the last one they said, 'Yes you've been brilliant, it's cleared up, we can't see anything, we did another scan at the end', and they couldn't see anything. They said, 'Right we're going to take out your Hickman line.' And that was horrible, that is the one memory I have that, and then I was like, 'So you're going to give me another operation?' And they said, 'No we're just going to pull it out.' I'm like, 'You're just going to pull it out?' And with the Hickman line, they put it in under a general and the point is it goes in, in your chest and it goes under your skin for, I don't know, four or five inches to stop the infection, and there's a cuff that holds it in, in the middle of that, and then it goes into your major vein to give you directly the drugs and to take blood. And as it turned out because my body had healed very well the cuff that held it in had really, all the tissue had grown into the cuff underneath my skin. 

And so anyway I went in to get it taken out and they just gave me a local round there and they started to cut it a bit. They tried to pull it and it wouldn't come, and my mum had to leave the room, she' And they for about twenty minutes they tried to pull this thing out and, even now when I think about it, it makes me feel, because I was just like, I was crying, I was really crying because I was, 'This is', I can't stand it', it was really sore. And they actually then had to cut up and give me more, and they said, 'It's just healed too much.' And then they eventually pulled it out. And it probably wasn't as long as it felt like, but it felt horrible and it felt like, 'I've done all this six months of chemotherapy, I've done it and now you're going to hurt me, you know, what's that about?'. And I knew, I mean it was because I was tired of it all by then, I was like I can't, I'd done six months of letting them do things to me and by the end I was like, 'Can I just stop now please?'

Felt guilty that she had survived; used to tell people she met that she'd had Hodgkin...

And I did also have the thing of, you know, I wasn't really that ill, 'Oh other people are much iller than me'. And I just had this kind of, 'Yeah maybe it was cancer, and maybe I had chemotherapy but really it wasn't that bad. And I didn't nearly die really, you know, not like other people do', and that survivor's guilt was a thing. But I needed to tell people about it, for the first four or five years I think anyone I met I said, you know, it was a very important part of who I was' 'Oh hello, this is my name, this is what I've done, this is what I'm doing, oh and by the way I had Hodgkin's when I was twenty, da, da.' And I don't need to do that now, I mean it's about thirteen years ago and it does come up but only, it's not the most important thing in who I am, there are other things now, but for a long time it was. 

And it was quite interesting because this year for me and my mum a few other things have happened and other people have been ill and a good friend of ours died, and she said, it was really interesting, for my mum it was a very significant thing me being ill, and when this person died, and she said, 'God, and he died of cancer,' she said, 'We've been so lucky that we haven't really been that ill.' And then she was like, 'I forgot,' she said, 'Well I haven't forgotten but it's a blip that's in the past now rather than a central thing.' And I do feel like that, it is something that happened and something that I learnt from but it's very, it's further away and it's a kind of a thing that has formed me but it doesn't define me now.
 

Repeated her first year at university and struggled to settle down both academically and socially...

So did you end up missing the best part of a year of university?

Yes.

So you went back and started all over again the next year?

Yeah and I repeated a year, I repeated the year then.

Yes it must have been quite tough, I mean you talked about having a different set of peers?

Yes

Quite a bit younger?

It was hard, it was really hard actually. I didn't necessarily have to drop out but it was the right thing to do that I did. It was, I remember it was hard to get back into working and writing essays, I hadn't, I mean that felt so long ago. And I was doing philosophy and politics and I remember the first essay, or one of, maybe the second essay, I got', you know, about the problem of evil and the philosophy of religion, and I got myself in a complete state because I tried, I couldn't organise my thoughts very well and therefore I couldn't write an essay very well. So I think both academically I struggled in terms of being on top of it. But socially I think it was quite hard too because I mean I was quite social and stuff but I tried. I also felt really distant from everyone and ended up actually spending a lot of time with some of the more mature students because it's just really, at a different, a lot of the people around me I just thought were so young really. And rightly so, but I didn't feel like that. I mean I did do all the things that students do, I went out and got drunk and I did all that sort of stuff and I didn't, I wanted to in some ways, but no, the first year and the second year were quite hard. 

And when I got my degree I was so, and my mum and my dad both came to the graduation, which isn't really very usual but, well for my mum and dad, for me. But we were, they were so proud of me and I was so proud of myself for getting through it, I think just having gone through all the stuff and done it in three years in the end, because I think there were times I was struggling quite hard. And I got a 2'1 as well, I don't know how I managed that, but in terms of, not because I don't think I was capable of it but just in terms of working. So in all it was, although what then I did at university, I spent a lot of time at university in doing other groups. I was, to me that was actually as much, you know, I did my degree but I was also on like the women's committee and the union council and anti-racist committee so that filled up my time I think, and did a youth club for refugee kids and stuff, so that was kind of to me, I was, by helping other people, getting involved in those sort of things that helped me I think, or maybe that's just what I do. But I think one thing I would say is that it is very hard to try and find an even keel again.