Interview 70

Age at interview: 49

Age at diagnosis: 39

Brief Outline: Non-Hodgkin's lymphoma diagnosed in 1996 after developing swellings in his neck and face. Treatment' chemotherapy, radiotherapy and a stem cell autograph. Two recurrences. Treatment included an allogenic bone marrow 'mini transplant'.

Background: Unemployed, living with partner, two adult children. Ethnic Background: White Scottish.

More about me...

One day he felt what he thought was a couple of strands of tight skin in his throat, which he assumed was due to a slight infection. A few weeks later he felt a large lump in his neck, showed it to his GP, who suspected an infection. Two weeks later he felt that something was pushing his eye out, for which his GP gave him Sudafed and painkillers. After another two weeks he had difficulty breathing and his GP treated him with decongestants and more painkillers. His partner persuaded the GP to arrange an appointment with a visiting Ear, Nose and Throat specialist, who referred him to the local hospital for a biopsy, the results of which showed he had non-Hodgkin's lymphoma.

 

He was given 6 doses of CHOP chemotherapy followed by 10 sessions of radiotherapy to his neck and 3 doses of methotrexate chemotherapy. After a two month break from treatment he was given a stem cell autograft. He had a remission lasting about 11 months then he experienced fatigue and felt lumps on his neck again. He had more treatment and was in remission for 8 - 9 months. Then the lumps recurred in his neck. He declined immediate treatment and instead went abroad for a holiday, starting treatment on his return. He was given a 'mini transplant' using bone marrow from his sister. After 3 - 4 weeks in hospital he was sent home and within 4 days had a heart attack caused by an infection of his pericardium with cytomegalovirus, and spent another 4 weeks in hospital. He had another cytomegalovirus infection affecting his eyes 18 months later. His lymphoma is in remission, although he suffers from other health problems.

 

 

 

Treatment for his non-Hodgkin’s lymphoma left him with erectile dysfunction; he now uses Viagra.

Did the treatment have any effect on your fertility?

 

Oh I’ve not got none.

 

Do you know that for a fact?

 

Yes. I was told that way back, 1996, and I mean I get Viagra now and that’s brilliant, you ought to try that. Well not you obviously because you’re female but, you know, I mean if you feel like taking the Viagra at the rate the doctors say you should take it, you know, you could give an 18-year-old a run for his money. But it’s a bit awkward. I mean I know 18-year-olds don’t mind walking about with big lumps in their trousers but when you get to my age it’s just a pain in the arse. So no I don’t think, it made my masculinity a bit more controllable.

He was originally told he wouldn’t survive his lymphoma so stopped caring about his finances;...

Two years, from 1998 till 2000, I was told, “You’re not going to survive this, this is going to kill you, we cannot stop it with the technology and the medicines we have now”, so I felt sorry for my partner because I mean technically she was living with a dead man, and it didn’t matter what she did, in two years time she was going to be on her own. And luckily the something else popped up. But when I was told they’d got something else that could possibly help, it was kind of hard to say, it’s not, it wasn’t a let down, it was just something very different, it was harder to deal with than it was to deal with being told you’re going to die. Because when somebody tells you you’re going to die, your pension, bollocks to that, you don’t have to care about that anymore, you don’t have to care about savings. If they’re going to send you a thing through the post saying do you want a £25,000 loan, you immediately say yes. But when they tell you you’re going to survive you’ve then got to deal with all this crap again, and that was quite hard, you know. Well I think it was quite hard for me, I think my partner coped with it better than I did. I think she’s coped with just about everything better than I did.

Since having non-Hodgkin’s lymphoma he finds that other people can afford things that he can’t,...

The thing that I noticed most is that people we know move on, you know, “Oh we’ve got a new car, oh we’re buying a new house, oh we’re going on holiday here, we’re doing this”. We don’t, we can’t do that. But my partner and me we don’t have a great, if we have a social life it happens in these four walls or at a friend’s house, or maybe one night a month we might nip across to the pub. Because the pub is four or five miles away I don’t drink. Yeah, my partner can usually do a fair bit of that. But we don’t have as much of a social life as most people. 

 

Most of our money, I would think, is spent on our daughter, trying to make her life as easy and as normal as it can be. A school trip, if she doesn’t go on a school trip she’s going to feel left out, yeah? I mean you’ve got to draw the line at she’s not got her own horse or anything, you know, I mean you’ve got to draw the line there. She would want one, I mean she’s at me for a cat. But she’s always well turned out, she’s a happy child, she’s very well adjusted. I think some of her teachers are a bit shocked at times, but she’s well liked and most of our money is spent on her. You know, she needs a computer for her homework, so she’s got a good computer. I’ve done without a lot for a couple of months and managed to get a good deal on a computer. She lives in the middle of nowhere, so we got her a pushbike, yeah? And some of her friends, you can tell that there’s jealously there because, “I’ve not got one of them and I work?” You know, “How can you manage it?” I say, “Well I’m not in the pub every night pissing against the wall,” yeah? And you try to get people to understand that. But there is quite a lot of jealously that you can feel coming from other people, and there’s nothing you can do.