Interview LC23

Age at interview: 56

Age at diagnosis: 55

Brief Outline: Diagnosed with mesothelioma in 2002, and is having palliative care (died July 2003).

Background: Carpenter (retired), married, 2 children.

Before mesothelioma was diagnosed he had a suspected chest infection, pain in the chest, and pain...

Well it all started February, I had a terrible cold, well I thought it was a cold for about three weeks and I kept coming to work instead of having a week or two off so I could finish this job you know. So I kept going in and it seemed to get worse. And then we went away for Easter 2002 down to my wife's auntie's in Folkestone and I got struck there with pleurisy and it was really painful, it doubled me up.'..

So I went on penicillin, a course of penicillin for a week and pain killing tablets and that seemed to get rid of it. So I went down my own doctors to notify him what had happened and he sent me for an x-ray locally and they said there was something wrong so they sent me down the hospital. And they took more x-rays and then they wanted me to have a scan. So I had a scan as well and they thought it might be to do with asbestos. And then I had to go for a lung biopsy which was one hundred percent it was mesothelioma.

But getting back to when I was first diagnosed with mesothelioma it wasn't only just the pain in my chest I used to have a pain right up in my shoulder, it was like a dull ache for ages you know and they give you pain killers to help that which it does, you know it kills the pain a bit so it makes you feel better. Because when I was putting up with that, because I don't like taking pills if I can help it, I'm not that sort of person, but at the end of the day I had to have something because it was like having a toothache in your shoulder all the time and you had to have something to stop it you know.

He felt very depressed after being told that no treatment was available, but then he got on...

They said, well when they told me, the doctor told me "You've got mesothelioma," he said "there's no treatment, we can't treat you at all." And I really felt down at the time you know. And then of course when we got home me and my wife was really down. I was down for a couple of months you know really, well didn't want to do anything, and cried a lot you know. And then you just think, well one morning you wake up and you've got to live the rest of your life, get on with it you know, it's no good moping about and that's what we've done. We haven't looked back since really.

The nurse offered practical support and got him a grab rail for the shower.

Could you say a little bit about where you've gone for help when you've needed it?

Well the nurse come out, when I said I was having a problem getting in and out of the shower because we've got a shower over the bath so you have to step into the bath and being as I was getting a bit weak and wobbly you know, she had it measured up for a grip rail, well a grab rail they call it, so you can grab hold if you're feeling a bit sort of funny in the shower or anything, and a seat that clips onto the bath, that you can sit on to have a shower in, you know. Because we never used the bath since we had the shower, so she did get one organised, and we didn't have to pay for that which was good you know.

He obtained compensation and Industrial Disablement Benefit when diagnosed with mesothelioma.

How has all this affected you financially and what you have to do to get any help at all?

Well when I was first diagnosed and the doctor said, "You'll have to pack up work and sort your finances out because you know if you've only got a year to eighteen months', it did worry me a bit actually because me and my wife has always worked and we never claimed for anything you know and it did worry me because if I had to pack up work and my wage is gone you know. But you can get benefits, Industrial Disease Benefit, which you have to fill a forty page form out, well most of them is like that and we've never done it, and it took us ages to fill these forms but we done it in the end and you do get compensation but it doesn't mean a thing really, you know your health is more important than that. But then again it does help, you know because if you haven't got a wage coming in the benefits does help a bit.