Interview LC18

Age at interview: 55

Age at diagnosis: 54

Brief Outline: Diagnosed with mesothelioma in 2002. Had a pleurodesis operation in February 2002, followed by radiotherapy (to relieve symptoms) in April and October 2002 (died July 2003).

Background: Engineer- welder (retired), married, 3 children.

Explains that mesothelioma was caused by contact with asbestos.

But my particular cancer, mesothelioma, is not caused through smoking, it is caused through working with asbestos when I was a young man. I did an apprenticeship in engineering and also welding when I was 16 and I worked for the same company till I was 26 but for the first five years I was there, I was an apprentice, but the factory actually run on steam; everything, we used to make tyres so everything was run on steam.  

And in those days, back in 63/64, everything was lagged in asbestos. The boilers that we had was lagged in asbestos, all the pipe-work was lagged in asbestos, even the roof was lagged in asbestos so you just couldn't avoid it. Any pipe-work leaks we had we had to knock the asbestos off with a hammer, sawed a bit of bad pipe-work out and re-weld a new piece in. The worst, the worst exposure really was every two years, I worked there ten years so if you like five times I was exposed to, when we did insurance testing for the boilers. Because on the outside of the boiler it was, the lagging was six inches thick and it was, because we were young kids, apprentices and that, it was our job to strip all that off. And they're very large steam boilers and we'd spend a week nearly just hacking and pulling all this asbestos off, lagging off the boilers. And then once you get down to the boiler itself you'd be wire brushing the rivets and the seams, and all that, ready for pressuring it for insurance testing.  

And I mean as kids we just, we played in it, we'd be knee deep in it some days and we'd be throwing it at each other and just messing about in general with it. Nobody realised at the time that it was, that it was going to be a problem later on in life. And of course with asbestos the incubation period is between thirty and forty years so you can be quite happy as I was for forty years nearly and then it just changes your life without any warning at all really.

He felt numb when he got the diagnosis and then he and his partner decided to get married.

But when we got the news it was just numbness really. I think a lot of people act differently, a lot of people burst into tears, we didn't do any of that, we just sort of sat and looked at each other for a while. It wasn't really till we got in the car to come home and we was on our own that the impact really hits you then. And it's very difficult, because there you are, the two of you know what's going on but you've got a family that doesn't know what's going on. They know you haven't been well and, but actually we went to a caf' and had a cup of tea and a sandwich and we'd always decided to get married anyway but we sort of decided on the spot there and then that we was going to get married.

Explains that radiotherapy eased some of the symptoms of mesothelioma.

Yes what the radiotherapy does actually is it helps with the symptoms. It holds back the tumour for a short while and it helps with the pain. It doesn't really reduce the tumour because the tumour; there's nothing you can do to stop the tumour growing.

This is in the case of mesothelioma?

Yes it's, all it does really is makes it a lot more comfortable. I went through a period of, in I think it was in June this year when I started to get, my chest started to get very, very tight and thick with phlegm and stuff. I was put back on radiotherapy then and that stopped the phlegm coming up on my chest which does in actual fact help you breathe a bit easier. So for them reasons radiotherapy is a good tool. But I was offered, I could've had chemotherapy at the start, a year ago I could've, they suggested that chemotherapy may help with the symptoms but what chemotherapy does is it gives you other symptoms, hair loss, being sick and feeling generally ill and at the time I was not feeling ill. So the two consultants I had seen suggested that I leave the chemotherapy, just stick with the radiotherapy.  
 

Explains why he had a pleurodesis operation and a biopsy.

Alright so you've had the biopsy and you've had the bronchoscopy, did they then decide they knew what the matter was?

No, no.

Not then?

No.

So what happened after that?

I was sent to another hospital, in our local hospital we just haven't got the facilities to do those sort of tests, so I was sent to another hospital. There I was put to sleep under anaesthetic and two incisions were made into my back and there they could actually get access to the chest wall as well as the lung. They took scrapings from each side of that. But while I was having the operation they did find a tumour, that was quite a large hole, so they did an operation which is called a pleurodesis which actually sticks the lung over the tumour so the hole is sealed then with the lung so it's actually all welded together. Which; the problem was that where I'd been on the warfarin it had thinned the blood and stopped it clotting so the tumour was actually bleeding into my chest cavity, but when I stopped the warfarin it certainly slowed the bleeding down quite a lot, but I was still getting this problem of blood into the chest cavity. So by doing the pleurodesis and putting the lung over the hole it stops the fluid growing into, you know flowing into your chest cavity which is; I've never had a chest drain since that operation which was in February.
 

Describes his pleural effusion and the insertion of a painful chest drain.

I went back to work, within ten days I just could not breathe at all so back to the doctor's. He sent me straight back to the hospital again and there they x-rayed me and found that I had a chest full of fluid. I was given a chest drain, which is probably the most uncomfortable thing you'll ever have.

Can you explain how they did that?

Well they just nick your skin here in your side and push a tube into your chest, into your chest cavity and 

With local anaesthetic?

Yeah you're still awake but it's not painful so much as uncomfortable, but of course when the anaesthetic wears off and you've got it in there for three days, it does get very painful and very difficult to sleep.

That was draining fluid out?

Absolutely yeah and the fluid that was coming from my cavity was almost pure blood, it was bright red, very dark red.  

What were your feelings at that stage, you must've been a bit nervous?

No I was, because I was told that I had an embolism, I just thought well they said that you know it's a rare thing to have and you'll get over it.

So at that stage the doctors thought it was due to an embolism?

Yes and I was still on the warfarin tablets then and taking them regularly. But anyway I was in for three or four days and they drained my chest out, I felt great after that, came home. I didn't go back to work then, the doctor wouldn't sign me off but after a week I was, I was just so impossible for me to breathe again, so back to the doctor's again, back to hospital. There again I had another x-ray and another chest drain and again it was bright red, but even then I feel that they'd missed out on opportunity because I never, they still never suspected anything else other than this embolism.  
 

Asserts that smokers are stigmatised and that GPs don't investigate symptoms as promptly as they might with other cancers.

I think all people with lung cancer are stigmatised, especially if they're smokers and those that aren't generally blame it on the smokers for their passive smoking. So everybody feels that lung cancer, I believe anyway, is self-inflicted. But you could say that about any illness. Every illness, or almost every illness is self-inflicted in some way or another so, but the stigma is definitely to do with smoking.

Has anybody actually said that to you or given you the impression that they felt that?

Yes, I go to a support group once a month and we're all lung cancer patients, and every one of them have suffered some sort of stigma in some way or another because of the fact that most of them smoked, not all of them but most of them smoked.  But it's, everybody feels that lung cancer is self inflicted. It doesn't get the funding say that breast cancer would get.

Have people ever told you specific examples of how they felt they were stigmatised?

Sure yeah, when you go to the doctors the first time you go to the doctors with a bad cough and coughing up phlegm in the mornings the doctor will almost certainly say to you "Do you smoke?" and once you've said yes, you're sent packing with a bottle of cough medicine. It's not a question, if you went to the doctors with a small lump the size of a pea on your breast you'd be straight into the hospital but you can be coughing up phlegm for years and nobody will offer you a hospital appointment. With other things like prostate cancer it's diagnosed very quickly and as soon as you go into the doctor's with a cough and you smoke you are just pushed to the back of the queue. And it's quite unfair really, people who go with problems with drink related or people who fall off a cliff through rock climbing are not stigmatised the same way that smokers are.
 

Reflects that death comes to all of us and that he has had time to organise his life and his funeral.

Yes when you first get the news that you have got an incurable cancer it's just numbing, you really don't know how you're going to cope, it's, nobody wants to be a coward but when you're told that you're dying and there's nothing you can do about it you don't want to be a hero either.  

It's, I suppose when the doctor looked at me and said that I was dying I could have looked back at him and said "Well so are you." We are, all of us are dying but what they've actually done really is taken some years off me. But in the end everybody faces death, everybody. Not everybody gets the opportunity that I've had to organise my life and my death come to that. I've organised my own funeral, and if I'd have got killed in a car crash I wouldn't have them opportunities. So I think you've got to be philosophical about it really and say that you was going to die anyway and you've lost perhaps twenty years may be. But, and they was probably the worst twenty years of your life anyway when you get old and decrepit and that, so I won't have that to worry about.
 

He found it very hard to obtain financial benefits after he was diagnosed with mesothelioma.

Yes when you first, when you first can't go to work you get sick pay, the firm I worked for didn't actually pay sick pay, so you go from that to state benefits, which is very little money. And of course all you want to do is get back to work but when you're diagnosed with cancer you can't go back to work and then you've got to tackle the Benefits Agency.  

And to be honest it takes months, it takes months, it's, it's one long worry. You can sit on the phone days and days on end, for months on end just to get what you're entitled to. Everybody, every department is split up, so you can claim this benefit from this office and they have to send you a form from another office to claim another benefit and then you have to claim another benefit and the people there I'm sure think that they're giving their own money away because they just are the most unhelpful people that I've ever experienced. I mean everybody goes to work and when they go home from work you should feel like "Oh I've done an excellent day's work today," but where these people get their job satisfaction from I really don't know, because they just do not understand what it's like to, for one day to have a wage coming in and the next day nothing, and you're just pushed from this number to that number.  

But in the end I found the secret and that is to find the department head's name first of all, get the manager's name, and then every time you phone up you go direct to that manager. Explain your situation, befriend the bloke, make sure you think he's your friend, and ask him how his wife is and everything else, and in that way you gradually get your money. But it took me nearly six months to get my benefits sorted out and in that time I had the television license people round knocking on the door telling me my television license was out of date, I got fined for that, the Gas Board was going to cut my gas off, the electric people was hammering on the door. We went from a quarter meter onto a payment card and that is very difficult when you're not well and you really don't feel well enough to cope with all that, but there is no choice, you have to cope with it. And these people they just give you the run around and run around, it's so haphazard.

Says that once he obtained his benefits and a car via a charity for virtually nothing the financial situation became easier.

What benefits can you end up with if you're lucky enough to get through the system?

You can get Incapacity Benefit, Disabled Benefit, I get an Industrial Injuries benefit. And the other things, I mean there is good out there, once you've got the system and you're into the system you can get your; I got a Mobility car which is a godsend to me. Mobility there's a charitable organisation [Motability] that actually get you a car for virtually free but it gives you so much freedom, and all you have to pay for is the petrol in the car.

Does the government organise that?

No, that's a charity, mobility [Motability] is a registered charity but they are, but you have to get certain benefits, invalidity benefit before you can get that, but then you can also get the little blue sticker for the window of your car, to help you with parking and stuff like that. So once you get there it's fine, you get enough to live on and you get a car and you get free parking. So once you get, beat the system it's brilliant. But it's getting there and it takes months and of course you're in so much debt at the end of it that you really use all your benefit paying the debts off. Its fine if you've been very clever and put a few thousand pounds by, but if like us we live week by week then it was, it was an absolute trauma.