Interview 20

Age at interview: 25

Age at diagnosis: 22

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

Background: Single; no children; works full time as a marketing officer. Volunteer for the Lymphoma Association helping other young people who are going through the experience of cancer.

Says that he was not really worried about the lump that developed in his neck and therefore...

So I'd been there a while, after about six months I'd noticed this kind of lump on my neck and hadn't really thought much of it at all at the time. It was just kind of, you know, just literally noticed that it was a lump and wasn't anything extraordinary at all and thought, oh it's probably just a bruise or something like that, or you know anything really. Nothing really entered my mind about it, nothing caused me to worry about it at all.

But again it still, you know, still didn't play and, still didn't go away at all and kind of continued to play on my mind. And I thought, you know, after a, some considerable time must have been a, a good two months or so of having this lump, I thought I'd better just go to the doctor's, my local GP, just to get it checked out. So I made an appointment and still wasn't at all concerned really, just kind of going along and it was all fine. And on that first appointment she kind of, it, well, my doctor said it was kind of a, a much larger than usual kind of lump and shouldn't really have been there, and still wasn't really raising any major, major issues and really causing me to worry at all. She just kind of said, 'Oh, we really need to get it checked out and perhaps go to a consultant to have it properly looked at and properly checked out. So she recommended me basically to a second doctor to go and have this thing checked out with. And again, still I wasn't really concerned, everything just kind of progressed slowly and I never really felt, never really felt any other kind of symptoms at all.

Describes his first CT scan and how the strange warm feeling (from the injection of the dye in...

Can you explain what these tests involve?

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, you know, they're still not [laughing] 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 [laughs]. And you have to get through kind of four cups in like over two hours and it's, it's like a big litre and you're just kind of forcing it down and it, 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, 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, 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, it, 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 [laughs] 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, 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 [laughter] so it's, it's kind of bizarre, bizarre kind of feeling when this injection goes into you. But other than that it's, it's pretty harmless really, and that's the CT scan and that, that gives you a kind of rough feeling of where, where the illness lies sort of on your chest and on your pelvis and you know, it basically runs through the whole body.

Had 3 weeks of radiotherapy after chemotherapy as a precautionary measure. Found it more 'dull'...

Where was that area?

It was in the, in the neck area on one side, on my right hand side. So that was where it had mostly been but obviously spreading down to areas of the chest as well. So these sort of new CT and PET scans had showed that, you know, all the chest area certainly had been cleared up and there were only sort of limited levels left on the neck and they were just sort of what everybody has basically but he, just to be sure we kind of had three, three weeks of Hodgk-, three weeks of radiotherapy just as a kind of, final say on the matter and hopefully blast it all out. Obviously, you know, radiotherapy goes with chemotherapy so you have to have the full experience I suppose [laughs]. So yeah, after that I was, I was, [sighs] I could see his reasons for doing that and I was quite thankful for that, that, you know, I wanted to be sure that it was all gone and that I was, you know, after this I could just approach life again without a worry that, you know, oh if we'd have only done that, I wouldn't be, you know, six months down the line. I mean I was still going to be worried that it might come back perhaps, my feelings were still going to be like that when I got to that area but it wouldn't be through my own fault by saying, you know, 'Oh I should have had radiotherapy.' I wasn't going to kick up a fuss saying, you know, basically saying 'Don't do it ' 'cos I, 'cos you know after going through six months of chemotherapy you think, oh three weeks, easy [laughs]. 

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, 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, that's about all it is really. It, it, 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, it, it's nothing like that in reality unfortunately [laughs]. Be quite exciting if it was but [laughs] unfortunately it's just rather dull. But yeah so, it's, it, literally the only problem with radio is just the mundaneness of getting there every day and waiting your turn and kind of seeing all, all the other kind of people queuing up before you and that, that, you know, it's obviously no real concern in the, in the larger state of things.

Found it difficult to start a sexual relationship with a body lacking hair in some sensitive parts.

I, 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, 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, bit of a stumbling block for me. A bit of an issue, yet I felt, I felt different from everybody, I didn't, I didn't want to you know. There was, I mean there was literally just no hair on my body full stop and it, it kind of felt very strange to be entering in a relationship and you know and entering a sexual relationship as well, with such a, a different body to the norm basically. I wouldn't say deformed because it wasn't, it's not, it's not a deformity it's just, it's just something different and I, 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 'cos I was lucky with the particular person that I was with that I could raise those kind of issues.

Found that during treatment he was able to talk more openly about his fears to a shiatsu...

It also helped at that time that I had my godmother had introduced me to kind of homeopathic remedies, not anything specifically, just kind of, well Shiatsu is specific, none, none of the kind of you know 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, who was the practitioner and he was really useful. Because, because he was a step away from everybody else I felt I could talk to him, you know, about all these kind of fears that I had, about all these issues that I had and that was, that was probably really, really useful because everybody else I felt was a bit too close. I didn't want to admit my, you know concerns and frailties. And I, I did have them at the time I, 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, you know, just put a brave face on it basically. So the fact that I had this, this person outside of those sort of circles of immediate friends and family was really, really useful.

Could hear people talking and laughing from the cubicle where he went to produce his samples....

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 and, of what to expect and I guess for me it was particularly worse because I'd led such a closed, 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, [sighs] 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 you know their mundane days and you're kind of stuck in this little cubicle and it's, it's just not a very pleasant feeling and. Obviously you don't expect the Ritz or anything like that [laughs] but just a little bit more privacy and getting used to explanation of what, 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, quite bizarre that day. And that, that day really did get me down quite a lot and it kind of, it kind of, it didn't really affect me too much I, I was a fairly positive person so I tried to just you know 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, 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.

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 you know, 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, it, 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, what, what's going on. It's really difficult to you know 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 you know dank and miserable and the facilities were, it's kind of, you know, you see this kind of paper, paper roller stretched over a chair and you just think, oh, it, it, it's not nice at all. So just the general environment could have been improved and you know, what you're offered on the day, it you know maybe to come back another day and take a look, maybe have a look and go through what was, 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, what to be expected. 'Cos 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 you know, that's it, done. It was just the initial shock that first time, you didn't really know what, what was happening. It, it, it was pretty depressing really and like I say that, that was the worst point of that time and I was kind of seriously thinking, oh God what have I got myself into [laughing]. 

But yeah so that kind of happened and associated with that you have to go for an HIV Aids test for them to store your sperm and that’s, that’s another area which I didn’t really expect and that was explained to me and that was fine, I had a bit more time to comprehend that but I wasn’t really given any level of counselling to kind of, ‘cos it, even though I was fairly sure I, you know, I was, wasn’t to worry about that, the results of that sort of test, it still kind of plays on your mind as soon as you have to take any sort of test you think, oh God what if I fail [laughs].

Talked about how he began to establish a serious relationship with his partner while receiving...

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, you know, no hair or whatever, or the fact that, you know, also, fertility in later years. We, 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.

Do you remember how you approached the issue of fertility, sort of?

Yeah, I mean obviously it wasn't sort of instantaneous but it was fairly early on and I, it, we approached a lot of issues at the same time. We just kind of talked them out and we would just kind of go through them that, the difference of you know, hair from most people. The fact that, you know, it, it was an illness that could come back and could potentially you know, I could potentially die in extreme circumstances. And so all of those issues we kind of confronted fairly early on in our relationship and just talked them through basically. And I just tried to basically explain how I felt about them and that you know I wasn't going to expect anything from anybody because I didn't think it was fair so you know I, I was just going to say, 'I just want you to basically treat it as a normal relationship if you can and see how it goes. And, you know, if you can accept these sort of issues we can just see where we go from six months down the line when things return to a bit more normality.' 

So we kind of approached it like it wasn't going to be a serious relationship but obviously dealing with all these serious issues it meant it was in essence, because you know, all those sort of issues immediately means you're in a sort of serious relationship. But we kind of put no, I put no restraints on my girlfriend at the time you know. I said you know, 'I give you whatever back out clause you want, you can just walk away whatever time I don't expect anything from you.' And I think that was the only way I could really approach it because I didn't want to be that, that selfish that if something did worry her, or freak her out, or you know, she came to think sort of, oh God, three years down the line perhaps, or you know ten years down the line when I want children, I have to go to you know whatever sort of clinic to kind of get it all sorted out, I can't have it sort of naturally done. So I, we, we basically approached it like that and said with fertility, 'If it is an issue you know, you can just basically walk away at any, any stage and I will totally understand because that's, that's all I can do really.' 

And I guess at the minute, sort of four years on we still kind of face those sort of issues and luckily she's still kind of accepting of, you know, if it, if it happens it happens if it doesn't then there's always that, it's, it's a second kind of guarantee I guess that something, something could happen. It's just, it's just something that, we're kind of dealing it, on a, kind of as it comes basis I guess still [siren]. We will try sort of naturally first off, as you, as you, as you only can and then if it becomes an issue then it becomes an issue we'll raise it when we have to deal with it. We know it's there so it's always something to fall back on if we have to but, hopefully, being well, it should, well, should hopefully lead a normal lifestyle like I do now in any case. It should all hopefully proceed well but, yeah I think that's how we dealt with it. We just kind of put no limitations on either of us and just said, you know, if one of us kind of thinks, God it's, it's too much, can't, can't cope with it that either one of us could have just walked away and we would have understood I think for you know for the reasons that we've gone through. Luckily again, like me she didn’t put any limitations on me and any restraints she just treated me normally like she would have done any sort, any sort of relationship basically and I, I was really thankful for that it, that I could have that sort of benefits. That I could just kind of progress, as any normal person would, you know. We would just do normal things, normal dates, normal you know everything just carried on as normally as we could and any sort of issues that were obviously apparent like, like the hair loss we just kind of took in our stride and we would talk them through first and then get over them and she’d, basically, it basically involved me kind of worrying about it, telling her that I was worried, and then she would just say, “Well don’t worry about it” [laughs]. And we’d just get on with it, which was great yeah.

Pretty simple [laughs]?

So, it, it was pretty simple basically it was fantastic that I had somebody like that that I could rely on. Especially seeing as she hadn’t known me before I was ill and, you know, put no, put no pressure on me really, it was great. 

You mustn't go through life worrying about it and try and be positive. You are not alone doctors,...

Probably in, well in retrospect just to not really, not really get bogged down with worries and fears and you know constant theories that could happen. Just to kind of concentrate on what is happening, and how you feel and just to listen to how, well just to be very attentive to how you feel and make sure you're aware of it and no matter what silly little thing it is, or it may seem to you, just to kind of assess it and raise it with your doctor and or your, anybody else around you and, you know. No matter how trivial it seems to you just you know go with it and raise the issue because it could, it could lead to more important things at the end but you never will know unless you, unless you find out the information. And also really just to realise the amazing network of people that are behind you and that are there to help. Not only charities and doctors and nurses and organisations like that, but also friends and family are so willing to give when, you know, when you, when you ask and they're always trying to, they're always only trying to help basically. If, if you find them overpowering and you know perhaps doing too much to, then just tell them, they'll be more than happy to just kind of take whatever you want to take, whatever kind of criticism or information you want basically, it's just a really good opportunity to kind of form those sort of bonds and, yeah, just to let people know how you're feeling and all that kind of stuff. And just try and take as much positive, positivity and good, you know, good level of focus on life really as you can from it because you can't go through life, for the rest of your life, worrying you know, what if this is round the corner, what if that's around the corner, because you just will never get around that corner. You just have to kind of keep focusing on what is important to you and just try and achieve it basically.