Interview 21

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.
 

Was angry at having relapsed and wondered whether he could have been given stronger treatment the...

About a year later I received a letter from the people who'd done, or from my consultant saying that, you know, congratulations I am now one year after my treatment had finished, which is indicative of good progress, and you're not normally declared clear until after five years but after one year with no relapse it wasn't a problem, and about two weeks after that I had my first night sweat, second time around. And then as soon as I had a night sweat I knew this was, what it was. So I went back straight away and then they did a scan and at that point they said it had then spread to my lower body as well as being back in my upper body so obviously the radiotherapy hadn't worked the first time around. It probably worked 95% but it had come back. 

So I then had to, I discussed the options with the consultant and really it was I had to go through chemotherapy the second time around, and they thought chemotherapy would do the job. So at this point I started thinking, 'This is a bit more serious than it was before'. But I must admit at the same time it was, even though it had spread it was still considered to be early stage, and I never thought I was going to die or anything, it was only, I never really thought of it as being cancer, you know, the types of cancer that kill people, it was just an obscure type of cancer which they cure but the problem was that they never gave me the correct treatment the first time around, and if they'd done it the first time around it would all have been gone by now. 

Well I think, in retrospect, at the time I thought it was just going to be a little bit more of the same, maybe worse, but I think, you know, deep down I was very unhappy about the fact that' A) they could have got me the first time round by giving me radiotherapy to a larger area of my body if that was possible, or they could have given me chemotherapy the first time around. The fact that I'd had a relapse was something which they previously declared as 'early stage easily fixed', I think I was probably as angry about that as about the fact that it had come back again. The fact that it didn't have to have, I didn't have to have had a relapse, they could have given me more stringent treatment first time around, but the diagnosis as it was, as they understood it and as it was explained to me, was that this was all the treatment that was required to fix the problem as it was then. So I think I was quite unhappy about that. 

Not that I ever actually said it to the consultant, but with hindsight I think that was the thing I was particularly unhappy about. And if, with hindsight I would have asked more questions first time round, is this a guarantee, is it worthwhile? If it had been explained to me that, you know, they could have given me stronger treatment I could have said, 'Is it worthwhile?' I wasn't told what, say, the relapse rates were, for instance. Maybe there was a 1% chance of relapse, maybe there was a 20% chance of relapse, and if I'd been given that information and they'd said, 'OK you only need this but there's a 10% chance of relapse,' I'd rather go with the 1% chance of relapse than the, and stronger treatment first time round or maybe chemotherapy first time round.

His sperm had been stored, unused, for 15 years when he was asked if he still wanted it saved; he...

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, 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.

Can you, just for the benefit of anybody else who might want to know, tell me what that involves?

Sperm storage involves giving a sperm sample, which is normally done, you know, privately into a container, just like giving a urine sample. They then take that and then they freeze it in liquid nitrogen at minus however many hundred degrees they do, which means it keeps for as many years as they wish to keep it, and then when they, if you ever wish to use that for artificial insemination purposes for instance, they defrost, if you will, or unfreeze, a portion of that and then they use that. And depending on how much they allow you to freeze would determine how many times you could go through the process. But it's quick, it's a very quick process. You go in, you give a sample, they take it away and then that's it, it's as simple as that really. They store it the same day I think.

Two years after treatment for a relapse he felt confident that his lymphoma would not return. He...

Oh yeah, in terms of follow-up I had to go, for the first two years they'd follow up every, I can't remember now whether it was every quarter or every six months, but probably every quarter I would go back and I would have tests and they would take blood and literally every three months for maybe the first two years, and then after two years maybe from two years to five years I'd go back once every six months, and then from five years to ten years I went back once a year. I think I was declared clear after five years, whereas I think after about two years after my autotransplant and the second bout of chemotherapy I sort of knew it wasn't coming back really. 

And it's seventeen years afterwards now and obviously, you know, I've never had a problem since that day, I've probably hardly ever been to the doctor's in seventeen years, I've never been as well as I am now since I had my illness, and so it just goes to show that you can have this and then once it's gone, you know, it's just been like being completely back to normal, it's just how they handle a process as you go through the process, for some people it can be good and some people it can be bad, and for me there were good sides and bad sides to it.

Personality changes damaged his marriage but he couldn't see it at the time; he was too proud to...

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.

Smoked before his illness and was advised to quit after treatment, which he did for a while; he...

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 I gave up.