Lymphoma

How do you feel about your body image?

Now, OK. When I was having treatment I felt quite de-feminised' you've lost all your hair everywhere, you've got a tube coming out of your chest, my periods had stopped. So really almost every feminine bit about you had been altered with, and that felt a bit unnatural, and I'd lost quite a lot of weight at the start with my treatments. But now absolutely fine. I feel healthy, I feel normal yeah, no problems now.

Did your periods get back to normal?

Yeah within about four weeks of stopping treatment. I was quite surprised about how quickly that had got back to normal.

How did your partner help you cope with those feelings of being de-feminised?

He understood completely what I was talking about. And we had a strong enough relationship that I knew that it wasn't going to affect the way he felt about me in the long run. And we both knew as well that these feelings wouldn't last forever and the things that I felt were wrong at that time would right themselves again. You just had to keep thinking how those were short-term things. Give it a few more months and you'll be back to normal. And, you know, that is what happens.
 

Has it affected the way you feel about your femininity at all?

Yes.

In what way?

What femininity? I mean in a glib kind of way. Yes very much. I think what happened is because my body became a site of treatment, so obviously, and I was on my own when I was diagnosed, I mean it's just one of these coincidences that happens in life, I was not in a relationship when I was diagnosed. So I think one of the things that's happened is that I've been through this kind of major experience on my own so I find it very difficult to conceive of forming a close relationship with somebody now. It's something I need to think about really, I'll get a bit lonely at some point. 

And my sex drive hasn't come back at all. And I think because in treatment your, the body image, I mean I was like a borg, I had a tube hanging out of me and I didn't find my body attractive and I had no sex drive. And now I still think of my body in terms of illness not in terms of a physical relationship and closeness with somebody else. It's kind of, because I go to the gym, I do yoga, I do all these things, but it's all to do with avoiding disease. And I think that is a fairly basic thing that I haven't, this is the first time I'm thinking about it actually. I don't think I've asked myself this question recently. But I don't think of my body as a site of sexual pleasure at all. There you go.
 

Through the second period of cancer my personality changed, I think that's quite an interesting one. I turned from a sort of happy, outgoing kind of person to a sort of introspective, unhappy, certainly very angry, and this is only in retrospect now, I mean at the time I didn't know it but I was really angry at this intrusion into my life, I think. And this had a detrimental effect on my marriage and all the people around me and I found, you know, I was impossible to talk to, I wouldn't listen to people saying that, 'Oh you're changing', or, 'You're not the person you used to be', or, 'You need to go and seek some help about your anger', or, 'This is affecting your relationships with your wife or children or your friends', or, 'I don't like the kind of person you're turning into'. And certainly it was, you know, I wasn't available to listen to this kind of stuff, even from professionals. 

And people around me who, me having cancer affected them as much as it affected me, well of course at the time I never really, I couldn't see it, you can only see the problem you're going through. And this definitely affected all the people who were around me and who wanted me to get better and who cared for me. And I could've handled that much better if there'd been somewhere, someone there who I'd have been able to talk to. I couldn't really talk to my consultant because he was dealing with another twenty people at the time and I considered myself to be a strong enough person. I think of myself as a coper, you know, I can cope with anything, but looking back obviously I coped quite badly with what I went through. 

And through, once the second set of treatments had finished the anger that I felt through that process, that carried on for a number of years and I think my personality changed and it was definitely a detrimental effect on my relationship with my wife and my son. I'm not particularly pleased about the way I was during that my period, especially as my son was so young.

Were you ever offered any kind of counselling or anything to deal with your feelings?

Yes I was offered, well I was told where counselling was available. My wife independently went off to see the consultant and a cancer charity to talk about the problems that we were having through the process and after the process. I mean the fact that once the treatment finished and I was OK and then it never came back again for years afterwards, I mean I was never the same person, and I think I only got back to being the person I was before personality-wise maybe five or six or seven years after the event, by which time it was too late for, things had been said and done which couldn't be unsaid and undone. 

And if I'd been offered counselling or if I'd gone for it, I think I was a little bit too proud to go for counselling as well, which was a mistake obviously. But if it had been more readily available or more strongly advised to me and I'd gone for it then maybe some of the things that were said and done wouldn't have been said and done and maybe things would have turned out better after the event.

So it ended in the break-up of your marriage in the end didn't it?

Yes it ended up in the break-up of my marriage, and I have to say that my, I mean my ex-wife through the whole process, she was fantastic, it wasn't her fault. But cancer affects everybody, it just doesn't affect the person who's ill. But it, you know, I behaved very badly in hindsight and what was, the things that were said and done, I can't undo them. And there it is. But it could have turned out different.
 

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.

Has having this illness affected the way you feel about your masculinity at all?

No not at all, not at all, I feel fine. It was explained to me that some of the drugs could cause impotence, could make me go off sex, go off, you know, I mean I said, 'Well presumably I'm not going to be feeling very well am I? That's normal isn't it? You know, who feels like sex when they've got flu?' So I just relate it to things like that. So no I feel comfortable with myself.