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Lymphoma

People's stories

Hodgkin's Lymphoma

Interview 46

Interview 46

Age at Interview: 25
Sex: Male
Age at Diagnosis: 22
Background: Marketing officer, single, no children. Ethnic background: White British.

Brief outline:Diagnosed with Hodgkin's Lymphoma grade 2B in 2001. His treatment consisted of six months of fortnightly sessions of chemotherapy, followed by five weeks of radiotherapy. In remission since 2002.

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Describes his first CT scan and having to drink a special fluid and have an injection that made him feel strangely as though he had wet himself.
Print Yeah sure, I think I had the CT scan first and that basically involved going to the hospital and you had to, you basically have to get, I remember not having, not being able to eat for kind of 24 hours before and basically turning up and it was a pretty horrific experience at first really. You kind of get used to them over time but they're still not my ideal way of spending a day. You kind of have to drink this fluid drink which they tell you tastes like orange squash but it doesn't. And you have to get through kind of four cups in like over two hours and it's like a big litre and you're just kind of forcing it down and it doesn't taste particularly nice. It's not the worst experience you'll ever have in life but it's not the greatest drink you'll ever have either. So I remember kind of forcing that down and then they basically put an injection into you and they inject this kind of, it may, iodine I think it is and that kind of all shows up the areas of cells which are affected by the Hodgkin's, by the disease, when you get passed through this kind of, it's like a big kind of round doughnut basically I suppose. You kind of come through, you just lie down on this kind of bench and it just passes you through slowly and you kind of breathe through. And the worst part of the whole thing basically is when they put this injection into you, it kind of feels like you've wet yourself in a funny kind of way, you get this kind of funny warm feeling down by your groin and it's quite, cos you're not really sure if you have or you haven't, it's kind of, the embarrassment factor of it is quite bizarre. And each time you kind of, you know you haven't but you still question it because of the feeling, it's like it's so strange so it's more of an embarrassment feature than any kind of physical pain. It's just you don't really expect it and you kind of think, oh have I or haven't I? You kind of see the nurses approach you and you think, oh my God don't check. So it's kind of bizarre kind of feeling when this injection goes into you. But other than that it's pretty harmless really, and that's the CT scan and that gives you a kind of rough feeling of where the illness lies sort of on your chest and on your pelvis and you know, it basically runs through the whole body.

Found radiotherapy not nearly as frightening as he had imagined and in fact found it rather dull; he remembers journeys home from the hospital sitting in slow traffic.
Print And the actual treatment itself the worst part of it was basically trying to get into the position for their rays to be exactly right on the neck. Basically it's kind of, they put you into this kind of wooden table and kind of pin your arms so that basically you can't move so that obviously the rays of the radiotherapy only hit the affected area, rather than unnecessary good tissue and blast that as well. So the most uncomfortable part is basically just getting into that kind of position with your arms kind of pinned back in this kind of weird uncomfortable position and just lying there for however long it takes is the only real uncomfortable part. As soon as the kind of lead blocks that are put above you to, again, combat the rays, you can't really feel anything from the actual ray itself. You're kind of aware of it happening but only because you're forewarned saying, “Ok, it's about to come on.” And you kind of hear this buzzing and that's about all it is really. It wasn't anywhere near as frightening as you perhaps think it's going to be from the name of it. And perhaps the thought of, you kind of get this science fiction view of perhaps big, bright red rays coming down on you, it's nothing like that in reality unfortunately. Be quite exciting if it was, but unfortunately it's just rather dull. But yeah so it's, literally the only problem with radio is just the mundaneness of getting there every day and waiting your turn and kind of seeing all the other kind of people queuing up before you and that, it's obviously no real concern in the larger state of things but… You had to travel long for your treatment? Not hugely long, I lived in at the time my hospital was in London so it must have been about kind of hour's car journey each day so, kind of there and back. But obviously most of the going back would be during sort of peak hour, rush hour traffic, so but that's kind of the abiding memory basically of radiotherapy is sitting in traffic on the way home just waiting to get there. It's not, that's probably less pleasant than the actual kind of whole process of it could ever be really. It's really not as big a worry as you kind of think it's going to be before you have it because I had this kind of cartoony fear of it I suppose.

Lost all his body hair and was relieved that his new girlfriend was understanding.
Print I was going to ask what happened to your hair, did you lose your hair? Yeah that was the other kind of - what are they called? - side effects, that's the word. That's the other kind of side effect I suffered. I mean I don't have particularly much hair now, still, but yeah, it did all fall out and it didn't really affect… As soon as I found out I basically just shaved my head and just got on with it and thought, “Well, might as well get it over and done with. I'm going to lose it at some point”. So I just basically just did it straight away and hopefully that would, that would be it over and done with. I didn't really feel any kind of, no real problems with that, what I did find strange was losing hair from other parts of the body, particularly in sensitive areas. At the time I was single, when I first got diagnosed, but I actually met my current girlfriend during my chemotherapy and I found again, that was a bit of a stumbling block for me. A bit of an issue, yet I felt different from everybody, I didn't want to, you know. I mean there was literally just no hair on my body, full stop, and it kind of felt very strange to be entering into a relationship and entering a sexual relationship as well, with such a different body to the norm basically. I wouldn't say deformed because it wasn't, it's not a deformity it's just something different, and I didn't ever approach it like that, I just kind of felt I had to take things a little bit slower and I was quite honest about that sort of thing because I was lucky with the particular person that I was with that I could raise those kind of issues.

Felt his consultant had rushed him off to bank his sperm after their first meeting about treatment; he felt unprepared and wanted to know more about what to expect.
Print But also at that time I think possibly the worst experience for me was when I was told I would have to go and give sperm, basically to protect, because the chemotherapy can affect your sperm count and… Fertility? Yes, it can affect your fertility in later years and he kind of explained all the issues around it but it happened so quickly. I mean I think it was at the first appointment with him when he was going through the treatments and going through the scans I was going to have to have. He kind of said, “Oh and we'll have to sort out your sperm as well, I'm presuming you want to keep it safe.” And I said, “Of course, of course”, you know, you can't think that far ahead at that time, you just have to kind of bank it for the future and take it from there. And literally he was on the phone to another hospital organising for me to go and visit them straight after that appointment and basically go and give sperm to kind of have it stored and sorted out, basically, so it would be there after all the treatment and I could use it if ever I needed it. So I just found the immediacy of that quite harsh and I wasn't really, you know, I'd already taken on board a lot that day of what to expect, and I guess for me it was particularly worse because I'd led such a closed life up to that. I wasn't really expecting all of that information, and so then to go straight on to this kind of other hospital and have to give sperm in this… it wasn't the nicest of environments really. I thought that could have been, that was the major area which could have been improved the most. I just wasn't prepared for it and it was quite a bizarre feeling kind of in this room, locked away in this room, and you could kind of hear other people outside in the corridor talking about their mundane days, and you're kind of stuck in this little cubicle and it's just not a very pleasant feeling, and obviously you don't expect the Ritz or anything like that but just a little bit more privacy and getting used to explanation of what was happening would have been a bit nicer as to what to expect. So I guess the harsh realities of what was going on was quite bizarre that day. And that day really did get me down quite a lot and it kind of, it didn't really affect me too much, I was a fairly positive person so I tried to just blank it out, basically, get on with it really, which I did. But the thought of having to go back a further two times to this facility to store my sperm just filled me with dread at the time but, again, thinking of it, thinking for the future like you have to basically, you just have to get on with it and go through these stages. What do you think could be improved in these places? What do I think they could have or I could have? Yeah, oh it could be improved in general, I mean communication, information? Oh, yeah, I think the way it was done, I think I could have been a) I could have been given a bit more time to digest all the information about treatments and what was going to have to happen from here before I had to do… rather than go straight on from that first appointment to another hospital and do it straight away. I could have been given a bit more time to think about what was going on and then also been given a bit more information as to what to expect when I got there. I mean, you know, it's a public hospital so you're not going to expect great facilities but I think just the fact that you could hear other people around you laughing and joking whilst you've got all this going on in your head and you don't really know what's going on. It's really difficult to comprehend it really I think. The way you could have just been put into a bit of a nice environment. The rooms themselves were a bit dank and miserable and the facilities were, it's kind of, you know, you see this kind of paper roller stretched over a chair and you just think, “Oh, it's not nice at all”. So just the general environment could have been improved and what you're offered on the day, you know, maybe to come back another day and take a look, maybe have a look and go through what was expected of you and say, “This is what we'll do and this is how we'll store it”, and just shown what to be expected. Because I think it was literally that, that I didn't expect it. I mean it was… the second and third times I had to go they obviously weren't so bad because I knew what was going to happen and you just kind of think, “Oh OK”, grin and bear it, get through it and that's it, done. It was just the initial shock that first time, you didn't really know what was happening. It was pretty depressing really and, like I say, that was the worst point of that time and I was kind of seriously thinking, “Oh God, what have I got myself into?”

He didn't want friends to know how serious his illness was because he didn't want to admit it to himself; he wanted them to treat him normally.
Print Yeah, I mean, just from the kind of way, I think the way I approached it I, from the first time I told them about what was going on, the way I absolutely abhorred trying to explain what it was, I really didn't enjoy it because I didn't want any kind of sympathy or them to kind of think, “Oh God”, you know, how serious it was. I perhaps didn't want them to appreciate how serious it was perhaps because I didn't appreciate how serious it was and perhaps because I just wanted everything to carry on as normal. So I'd tell them in this kind of jokey way and go, “Oh it's nothing serious, I'll get over it, get six months off work so what better than that ay?” So I'd kind of take it in that sort of manner and yeah I didn't want to feel excluded by the group for something that a) I didn't cause, or an illness that I didn't feel was really affecting me physically so it wasn't going to affect my life. And just didn't really want anybody to kind of give me any kind of special behaviour or attitudes towards me. I didn't want any kind of favours or anything like that, I just wanted them to treat me as they would have normally done so and everything to have carried on really, just to go down the pub whenever they wanted to and make a joke of whatever, just carry on from there. Obviously I'd be kind of sensitive to various sorts of issues that I'd never really thought of before and obviously I'd kind of think of things when people were kind of saying, you know, other sort of issues and perhaps it would go across to other sort of things that I'd been through similarly. Sorry I'm not explaining myself again very well. Take your time and think about it, don't worry. Yeah I guess it's like when your friends kind of joke about various issues which are a bit more sensitive to areas that I was more aware of. Sort of like, I guess there are kind of jokes around people dying and cancer and things like that, and you are a bit more aware of those sort of issues, and perhaps when people get, people won't get misinterpretations because, although cancer has affected a lot of people I still think there's a great deal of ignorance around as to what people actually go through and the day-to-day aspects of cancer and what's involved basically. I think there's still a great deal of information that regular people find out. And some of them will kind of approach it in a kind of, yeah, they don't know at all, but it was the people that kind of assumed they already knew everything about it, and that's just what people are like basically. They're going to assume they know everything about everything anyway, so those kind of people would kind of rattle you a little bit but if they're your friends and you know what they're like anyway, you kind of expect it. So people are just going to be like that, they're going to know everything about everything anyway and whatever you tell them isn't going to change their opinions. So that kind of thing, I kind of had a very laid back approach to and didn't want to be treated any differently to how I was normally really. So I'd just try and keep everything as normal as I could do for six months and just try and get through it in my own way really.

Worried that the treatment wouldn't work and he might die; he didn't want to worry his family and spoke to his shiatsu practitioner about his fears.
Print It also helped at that time that my godmother had introduced me to kind of homeopathic remedies, not anything specifically, just kind of, well Shiatsu is specific, none of the kind of herbal teas or anything like that. It was just kind of Shiatsu massage, which is like a form of acupuncture in massage, and through that I'd kind of met this guy who was the practitioner and he was really useful. Because he was a step away from everybody else I felt I could talk to him about all these kind of fears that I had, about all these issues that I had, and that was probably really, really useful because everybody else I felt was a bit too close. I didn't want to admit my concerns and frailties. And I did have them at the time, I just didn't want to worry other people with them. I didn't want to say to my parents, “Oh look, I'm really worried about this” because I knew that would then worry them. I wanted to show them that I was fine, and just put a brave face on it basically. So the fact that I had this person outside of those sort of circles of immediate friends and family was really, really useful. What were your concerns and fears at that time? Do you remember? I mean… I guess like anybody you kind of think, it wasn't a kind of regular fear that I had in my head. It was just kind of every now and again you kind of think, “Oh is this going to go away? Am I going to get better? The doctor's saying six months of chemotherapy but is that right? Am I going to be here 12 months down the line?” That kind of thing goes through your mind. So you were afraid that you might die? Yeah, yeah I guess the most extreme thoughts, they wouldn't happen that often, but yeah you would kind of think, “God, is this it? Is this going to be the end?” basically. You know, “Have I done enough in the world, already?” I was quite young at the time, I was 21 and had only just kind of started living and you kind of think, “Well, if this is it I've got to get as much done in…” and I wasn't really doing it. I was kind of, it does kind of play on your mind and you think, oh well, is everybody telling you the truth? And you just kind of have to trust them I guess. It is down to trust and…

Sometimes worries before check-ups in case his disease is returning but he also values the reminder of what he has been through.
Print How often do you go now for check-ups? It's been a very gradual process basically. As soon as I finished treatment I think I still had monthly meetings for about six months with my doctor and after that I would have a CT scan, again going through that whole process again. And then at that stage he would put it back to meeting every three months for a year and then at that stage back to every six months. And I think after this third year now I'm currently at the stage where I am having appointments with my doctor every six months and possibly having a CT scan once a year, so it's just gradually being phased out and I think after five years I think pretty much all contact stops and obviously you're back to trusting yourself again I suppose. And how do you feel before you go to those meetings with your doctor, before you have your scan? Do you feel apprehensive or not? Sometimes yes, sometimes I don't. Sometimes you do kind of think, “Oh what if it's back?” It kind of plays on your mind but I try not to let it really because once it starts playing on your mind you can't really get away from it. And I think that's what I've always tried to do is to just try and progress and move on and not worry about it and just concentrate on other things. So I guess in a sense it does work as quite a good reminder about what you've been through and what you still have to be aware of I guess, for the future. Because now I feel consciously so much more healthy and I regularly sort of check my neck for kind of lumps, bumps, whatever. And I think without that sort of appointment, gradual sort of process of going through, I wouldn't sort of worry about it as much. Because obviously during, in between times I don't think about it at all very much really. Might kind of come into the head once in a while but not as any great big deal. So I think it works as quite a nice sort of apprehensive reminder because it kind of gets you thinking about the achievements that you've been through and that you know you've combated this illness and got through it and relatively unscathed and you're now, well personally I'm now doing what I want to be doing in life and I take everything a little less for granted than I used to and approach life in a much more positive manner because of what I've been through. And I think that really helps. I think it really has kind of awoken a lot of my senses from before, which has been really useful. So yeah it does make you feel a little apprehensive but I wouldn't necessarily say that's a bad thing.

Gave up the job that he'd not been in long since graduating, moved back to his parents to be looked after during treatment, and used the time to consider a career change.
Print Well I was 21 when I first picked up any kind of symptoms I guess so I'd just finished university a few months before and had recently moved to London and had just started working and moved in with old university friends. And everything was kind of progressing pretty well, I think it was the year of 2000 actually, yeah it must have been 2000. So yeah, I was 21 and working in London, living in London for a public relations consultancy at the time. And everything had only really just got started after university, it was kind of like the first job and everything was progressing from there and didn't really have any sort of grand ambitions but everything was just sort of starting to take its place and everything. And I guess at that time I was quite lucky because, because I'd given up work I could just rest, relax at home, concentrate on doing what I was doing. I mean, before I had given up work I wasn't particularly happy in the job I was doing anyway so it gave me a really, really good opportunity to reflect on what I was doing, what I wanted to do and perhaps how I was going to go about it. So I remember just kind of using that time to my advantage and looking at different kind of options as to, yeah I was always looking to the future as to when I was going to get better, what am I going to do then, rather than kind of thinking, “Oh OK, we'll just deal with this now and then just stay on this subject”. I was always kind of looking to what I was going to do afterwards and that, I think that really helped. It gave you kind of something to aim for, and something to also occupy your mind as well and occupy my days because I think I would have probably gone a little bit stir crazy just kind of cooped up inside the house every day. But I was able to go out and do these kind of things and at the time I was kind of thinking of being a teacher so I went out and did experience in a school and was really lucky that I was just able to go and do these kind of things, which most kind of working people aren't able to do because obviously they've just got to earn the money. Now I physically wouldn't be able to do that and take a day off work every day, every week and kind of get experience in new things, go, “I'm just going to go off and try that for a day, a week, and see how, see what it's like”. So that kind of six months gave me a really, really good opportunity to kind of work out what it was I was doing and where I wanted to go from there basically. So you felt well enough to be able to do this? Yeah yeah, physically I felt fine. I was kind of going out with friends still. Wasn't really kind of staying out perhaps as late and doing actively as much but I could still get to the pub and watch my football and do all the sort of normal things that I'd done before, the kind of social activities that I'd done before. I'd just kind of have to take it a bit easier the next day perhaps, but even then I could still kind of, I was very active but I was, perhaps wasn't doing as much sport or anything like that. I had tried to kind of do very gentle exercise like swimming. I think I had also joined a gym and that wasn't quite so good, I didn't feel strong enough to do that kind of level of activities in that I was pushing myself too hard at that point.

Had thought getting a new job after having cancer might be difficult but used his illness as a positive life experience when applying for jobs.
Print Because I'd given up work and everything there was a sort of worry in my head that people kind of judge you for, as soon as you're looking for work after coming back from an illness they'll kind of look at the illness and kind of think, oh bit of a risk. And in my experience I haven't really found that at all and I'd say that's quite a positive thing I think. Although perhaps some places will still, maybe will still look at you and think oh, I think you can turn it into a positive experience and turn it on its head and use it as a life experience, put it on your CV and just kind of don't be ashamed of it. Just kind of explain the details, because I think people only put you down as a risk when they don't know what they're dealing with. So as long as you're kind of aware of the issues and can explain them to potential employers and don't really worry about it, it's fine, you can get back to work. And I mean since starting work again I've felt fine and things have progressed and I'm just treated normally by anybody and everybody around me and it's just a, it's a good environment to be in. And it is quite, you know, can be quite worrying when you're going through kind of treatment and what are you going to do next. But just kind of take that time to think about it and once you get to that stage, just approach it differently and kind of say, just be very up front I would say. If people have a problem with it then it's their problem not yours really.

Met his girlfriend during his chemotherapy when he had lost all his hair; he discussed his illness openly with her and that helped them develop a strong relationship.
Print At the time I was single when I first got diagnosed, but I actually met my current girlfriend during my chemotherapy and I found again, that was a bit of a stumbling block for me. A bit of an issue, yet I felt different from everybody, I didn't want to, you know. There was, I mean there was literally just no hair on my body full stop and it kind of felt very strange to be entering in a relationship, and entering a sexual relationship as well, with such a different body to the norm basically. I wouldn't say deformed because it wasn't, it's not a deformity it's just something different, and I didn't ever approach it like that, I just kind of felt I had to take things a little bit slower, and I was quite honest about that sort of thing because I was lucky with the particular person that I was with that I could raise those kind of issues. And it took a bit of time and a few kind of heart-to-heart talks about those sort of issues but it was great because she didn't expect anything of me and we went for it very slowly, and it, at the end of the day it didn't matter to her so we kind of got over it. And I think once you've been through something like that it can only pave the way for a stronger relationship 12 months, two years down the line. So from then I knew, it kind of gives you an automatic reference as into a serious relationship as to how that person's feeling about you, the levels that they will accept from you. You know, if they can take that they can take quite a lot basically, and that's what I was quite impressed with. People around me sort of accepting those differences that I did have, but not really, but still treating me as how I wanted to be treated as in a normal person. So those sort of more obvious differences like the hair loss, they were kind of like a big issue for me at the time because there was nothing I could do about them. Psychological differences I could just kind of glaze over and not admit to, but physical differences there was literally nothing I could do about it, so it was a big, it was difficult to get over at first and because it was such a new relationship and perhaps if it had been with a girlfriend that I'd had for a longer period of time who I knew better it would have been a different sort of, it would have been an easier process because you already know them so well. But because I'd literally just met this person and she only knew me how I was with no hair and with, you know, as an ill, basically an ill person who wasn't doing very much during the days, it paved for a very strong relationship I guess and it meant I could trust that person a lot, lot more than I could other people, I guess, because she'd understood to such a degree that, you know, I'd had to show her something that was a weakness, well, that was a difference for me, to other people. Whereas most I could just kind of hide and get away with basically, so that kind of created a very strong bond between us I think and it really helped in creating a good relationship I think. So you had that sort of open, proper communication, honest communication? Yeah, I mean with that sort of thing I think you immediately have to jump into the deep end. There was no kind of getting away from it. It was either kind of, you ignore the issue for however long I was going to be ill for until it grew back, or you kind of confront it straight away and get over it basically. I think the way we did it was the better way, I didn't want to miss out on what should have been a normal relationship in any other circumstances, I didn't want to be treated differently, so for me not to be treated differently we had to kind of approach it head on and just get over the issue that I had no hair or whatever, or the fact that, you know, also, fertility in later years. We had to deal with a lot of serious issues on day one of a relationship which, you know, we didn't know where it was going to go basically.

With hindsight he regrets not having been more open to seeking information earlier - he thinks it would have been a healthier as well as easier approach.
Print Is there anything you wish you had known when you first found out, or anything that you still don't know about lymphoma? There probably was at the time when I was first diagnosed because, like I said before, I was very closed to the whole thing and it's only through a very gradual process that I've picked up more information, and in fact since I've finished treatment I know so much more now than I ever did going through chemotherapy and radiotherapy as to the effects it would have on me. Now I actively look at information and will read articles, journals, talk to people and find out their own experiences and find out so much more. And I have a much more healthy attitude towards it, I think, and in retrospect I really wish I had had that attitude from the start basically. Because I think it would have helped me deal with whatever issues I went through throughout treatment and I would have known not to worry about certain things and would have raised certain issues with certain professionals and whatever and could have talked, could explain things better to friends and family and not put them through as much worry and stress and just basically I could just say there's never really enough information that you can take really. You can always take on more and take on different people's perspectives as soon as possible. It's all going to help in the long run. Obviously don't bombard yourself with only the negatives, because there are so many positives as well to take. You can't just take statistics, cold statistics, and just say, “Oh this is what is going to happen to me, I'm one of these 0.03%” or whatever it is, you have to look at the positive aspects and look at people's experiences and what they've taken out from it and don't kind of get bogged down by negative thoughts and all that kind of thing. Just keep a very open frame of mind to it all, and that's how I would have hoped to have taken it but obviously instead shut myself off from everything.

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