Interview 64

Age at interview: 46

Age at diagnosis: 29

Brief Outline: Diagnosed with Hodgkin's disease in 1988 after night sweats and a lump in his neck, treated with radiotherapy. Recurrence treated with chemotherapy and autologous stem cell transplant. In remission.

Background: Materials Manager, married with two children aged 17 and 10. Ethnic Background: White British.

More about me...

He had regular night sweats and one day woke up with a large lump on his neck the size of half a golf ball. He showed it to his GP who referred him to a consultant who biopsied the lump. He was then put on a 6 week course of radiotherapy to part of his chest and neck.

 

A year later he had another night sweat and realised that his cancer had returned, and tests confirmed that the disease was now present in his lower as well as upper body. He started on a 6 month course of chemotherapy, during which scans showed that his cancer was not responding so he was switched to a different chemotherapy regimen followed by an autologous stem cell transplant. He has been in remission ever since.

 

He felt angry when his cancer returned and wondered whether he had been given the best treatment originally. With hindsight he recognises that the chemotherapy caused his personality to change, making him very difficult to be with, which led to the break up of his marriage. The chemotherapy caused him to be infertile and he accepted an offer of sperm storage for later use in artificial insemination if he wanted more children. He later remarried and adopted his second wife's child but has not fathered any more children and his stored sperm has now been destroyed.

 

 

 

He had banked sperm before having chemotherapy for Hodgkin's lymphoma 15 years ago; he hasn't used it for artificial insemination since, but was glad the possibility had existed.

 And was there ever any problem with fertility from all the treatment that you had, because you’ve gone on and fathered another child I think?

 

Oh right yes of course, that was a major side effect. No, I became sterile as a result of the chemotherapy, so I cannot father children. What did happen though was that I was offered the ability to place my sperm in a sperm bank, which I did, and that’s been there for the last fifteen years, and it was literally six months ago they wrote to me asking me whether I wanted to let this go now. So for the last fifteen years I could have used artificial insemination if I wanted more children. I’ve remarried but my daughter, it was my wife’s before we got married, and she was three at the time, so I’ve since formally adopted her and now she’s my daughter. But no I couldn’t have had children naturally, but through the last fifteen years if I’d wanted to, I could have tried for artificial insemination. And this was offered, you know, I didn’t have to ask for it, and it was nice to know it was always there if necessary.

 

So they were offering that as long ago as…?

 

1990, yeah.

 

Yeah good.

 

Yeah and they say they normally hold it for ten years. But they held mine for fifteen. In fact I’ve moved house maybe ten times in those fifteen years and lived abroad for seven years, and how they found me I’ve no idea, but they wrote to me recently asking me whether I wanted to let it go, and I let it go at the time. But I was very pleased to know that was available and it was always there.

 

Having lymphoma made him really angry and he coped badly; he didn't accept offers of psychological help and his personality changed for five years or so, by which time his wife had left him.

 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, you know - I was really angry at this intrusion into, you know, my life, I think. And, you know, 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, you know, people saying that, you know, “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, you know, your relationships with your wife or children or your friends”, or, you know, “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, you know, 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, you know, he was dealing with, you know, another twenty people at the time and I considered myself to be a strong enough person. You know, I think of myself as a coper, you know, I can cope with anything but, you know, 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, you know, my personality changed and it was definitely a detrimental effect on my relationship with my wife and my son, you know. 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 okay 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 counseling, 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, you know, she was fantastic, it wasn’t her fault. But cancer affects everybody, it just do

He continued smoking throughout his lymphoma treatment because it was stressful, but stopped later; he took it up again but quit again when he met a new partner who didn't like him smoking.

Did you change your lifestyle in any way as a result of your illness in terms of diet, exercise, smoking, that sort of thing?

 

Well I was a smoker at the time and throughout the whole process I was told that smoking as a contributor to lymphoma would not necessarily have had anything to do with it. And in fact they advised me through the process, “If you’re a smoker keep smoking, because the stress factors are high enough anyway and we don’t necessarily want you to create more stress by giving up smoking through the process. Though of course they advised that it would be in my long-term interest to give up smoking afterwards because if I’d had a type of cancer in the past that was probably some kind of indicator that I might be more liable to other types of cancer in the future and it was best for me to reduce my risk. But I was not advised to stop smoking through the process.

 

And did you stop smoking later?

 

I did stop smoking later and then I took up smoking again some time after that, and I’ve stopped now.

 

Well done. Was that difficult?

 

It’s always difficult to give up smoking I think because you can give up for a period of time and then three years without a cigarette and then you can pick one up and it’s like you did it yesterday. So I imagine it’s the same as alcohol or any other drug.

 

Did you just use willpower or did you use any particular method to do that?

 

No I just used willpower. And actually it was when I met my second wife really that I stopped. She didn’t like it, I wanted her, she didn’t like it so, so I gave up.