Interview LC43

Age at interview: 54

Age at diagnosis: 53

Brief Outline: Diagnosed with mesothelioma in April 2003, followed by left extra-pleural pneumonectomy (left lung removed, together with chest lining, diaphragm, and lining round the heart, and replaced with Gore-Tex).

Background: Engineer in nuclear power station, married, 1 child.

Describes the thoracoscopy which he had before he was diagnosed with mesothelioma.

And the thoracoscopy was I think three holes in my side, under my arm down to my waist. The bottom, the bottom incision was for a drain, a chest drain to, because I still had some of the effusion left and then they went into my chest with the small cameras, intrascopes, and had a look round and they took some biopsies. After, when we talked to the surgeon who did it after, he actually said that they'd diagnosed mesothelioma. I can't remember which type it was now, and that he had a good look around and they could only find one site with the mesothelioma on my pleura. But they'd taken biopsies from my chest lining and my diaphragm and the only definite tumour they could see was on the pleura. And we got the diagnosis probably about six days after the actual biopsy but it was a long six days waiting.

His wife found the Internet useful, particularly when looking for the symptoms of mesothelioma.

When I was first diagnosed, my wife and my daughter who sort of are quite into computers were looking on the internet for information. I myself didn't want to know anything else about the disease, I didn't want to read about other people's problems, I thought I'd just worry about my own problems. But my wife and my daughter both looked and there are quite a number of web sites about mesothelioma although I think a lot of them when you first look are just about compensation claims. My wife found it very useful, particularly when looking through the symptoms of mesothelioma. So she was able to sort of look at these web sites and come into hospital and say to me "Now have you told them about your croaky voice and your backache?" So that was quite useful. And but we have been warned by several doctors and nurses that the, a lot of the web sites are unregulated so you can get a lot of misinformation on them. I think the only one that I looked at any information on was the Imperial Cancer Research one which actually gave a full description of mesothelioma and of the extra pleural pneumonectomy. And it was just the facts so I found that quite useful. 

Comments on his extra-pleural pneumonectomy and the time he spent in the high dependency unit after surgery.

Yeah I was accepted for the operation by the surgeon and it was planned to be done on June 2nd 2003, the operation was an extra-pleural pneumonectomy which was as I explained removal of my left lung, my diaphragm, my heart lining and my chest lining and having the linings replaced with Gore-Tex. I had to go to the hospital which was about one hundred and fifty miles away from home to have tests. Because the operation, it's quite a big operation they'll only do it you're really fit and so right up until the day before the operation I was having tests.  

So I'm not quite sure how long the operation took. I was, from leaving the ward to going back to the ward was about nine hours. When I came back into the ward, initially in the recovery room, I was in a lot of pain, my shoulders were very, very painful. But in the recovery room they sorted this pain control out somehow or another I'm not quite sure. So I eventually got back to the ward and I was really covered in, I had a tube up my nose, I had tubes in my side, I had a catheter fitted, I had lots of wires connected to my chest. I had six cannulas which are things that they can put drugs into all in one array on my chest to allow them to put antibiotics and things. But generally I didn't feel too bad. A little bit uncomfortable but nowhere as bad as I thought I would do. And I had quite a comfortable evening with my family, the hospital was very good. Their high dependency unit was part of the ward and my family was allowed to stay with me all the time. They actually found, they actually had accommodation within the hospital grounds for my family to stay with me as well and they could stay in the ward as long they liked which was comforting. And then the next day, round about half past 8 they got me out of bed (laughs).
 

Discusses his pain control and nursing care after his extra-pleural pneumonectomy.

How many days did you have the epidural?

The epidural stayed I think five days but that was my choice when to have it out. What each day the, after the first day they took my chest drain out and just seemed, each day they could get rid of a few tubes or wires so that each day was better.  On the second day after my operation they actually had me up and walking around the ward, albeit with nurses holding the drips and things like that. And again I didn't feel too bad but I presume it's because I had an epidural, other pain killers, and so you know lots of drugs. But I was certainly quite lucid, I didn't feel as zonked out or anything like that, I felt as if I knew what was going on. The nurses were really good.  In the high dependency unit I had my own nurse twenty four hours a day. It was very uncomfortable sleeping because it wasn't until, my wife took some photographs of me every day and so of course I didn't really know the extent of the wound or anything like that so my wife took a photograph and was able to show me on my lap top and the wound probably came from half way on my shoulder blade down through my back and under my arm to my waist and I had around about ninety metal staples in it and so that made it a little uncomfortable to lie on. And that discomfort stayed for three or four weeks, even after the staples were removed.

Describes the aspiration of his pleural effusion and a side effect of this procedure.

Yes they aspirated the effusion by, with a needle. I had to lean over the little table you have in hospital and they gave me a small shot of local anaesthetic and then they just put a long needle in through my, through the ribs, through the back and then they just draw it off and drain it into containers. And it really wasn't, I didn't feel it at all until they'd taken too much, so up until then it wasn't a problem at all. It sounds frightening but it wasn't. I didn't look at the needle or anything like that to see how big it was. And my wife managed to watch it okay so it was okay.

They aspirated one and a half litres of fluid and then my lung went into trauma because they'd taken so much off in one go which meant I couldn't breath properly. I could only, I could cough out but I couldn't breathe in so that was, that was quite frightening and I had to have oxygen. And they stabilised me okay and x-rayed me to make sure my lung hadn't collapsed but they did say that they'd taken off too much fluid in one go. And the fluid was quite a runny liquid but it had blood in it, they described it as being like Ribena. Again showing no signs of any infection.

He developed a rapid heart rate after his extra-pleural pneumonectomy.

Could you now say a little bit about the side effects of the surgery?

Yes apart from the obvious pain and discomfort I did have a couple of other problems. The normal stay in hospital after the operation is probably about two weeks but after nine days they thought that I was ready to be transferred back to my local hospital. They wanted to transfer me to my local hospital so that, rather than straight home so that the local hospital had knowledge of me if I had any problems. And so they'd arranged for an ambulance to transfer me the hundred and fifty miles and so that morning I got myself out of bed, showered and got dressed and then I felt very breathless and was obviously getting into some distress, I was very hot. 

And one of the nurses asked me if I was alright and I said I thought I'd done too much you know because actually getting on the white stockings you have to wear is quite hard and I thought I'd just tried to do too much too quickly. And so he said that he'd do the observations they normally do, blood pressure etc and then when, the blood pressure was okay but my pulse was 170 beats minute. And they took it again about five minutes later and it was still the same and so I had to have a cardiograph.  And I by then was getting quite worried and the nursing staff were quite worried because apparently when your heart stays that kind of rate then you can have a heart attack or stroke. And so they got the doctor to come and look at me and my heart rate was still at 170 and he said obviously you're not going to be moved today. And they gave me a drug called amiodarone, quite a high dose and this was just a drug to settle my heart down. And then over the next four or five hours my heart rate came down. 

Describes some of the side effects of his extra-pleural pneumonectomy.

Were there any other side effects of the operations?

Well the side effects since; I developed a rash and I'd been to my GP about it and he didn't seem to know what it was. Not, they weren't particularly worried about it, I was worried about it because of all the things you hear about these viruses that go through hospitals and all that but the rash is actually diminishing now. And I've also got a cough. Again my GP is not overly concerned about the cough but it would be nice when I go back to see the team at the hospital that did the operation to see what they think about it.  

And again one of the other things that I had is really bad wind pains in my upper digestive tract, really severe wind pains. And they were getting so that after I'd eaten if I moved I had like an internal whoopee cushion in my upper digestive tract and really severe pains with that and then occasional a sort of acid reflux. When I went to my GP about that he said again it's not abnormal for people who've had major surgery to have stomach problems and so he's given me a drug to counteract that and since then I don't get the acid reflux any more. I still get some discomfort in my stomach but not severe pains any more.

I think probably the worst problem was the backache and trying to get comfortable in bed. As I say right from March I'd not been able to lie down in bed, I'd only been able to sit up in bed and when I came home my first night at home, because in hospital I'd had an electric bed that I could adjust the backrest so I could sleep sitting up but at home I slept on just two or three pillows and by the morning I was in such severe pain that my wife actually had to help me get out of bed. And it's the sort of muscle spasm and also laying on the wound site, over the shoulder blade was very painful. But now most of my pain is gone, I can sleep on both sides and my front. They recommend following the operation when you can actually lie down that you lie on the site of the wound, on the side that's got the wound in which I never really got an answer as to why because it's, but in actual fact it is more comfortable lying on that side so I don't have a problem now.

He received plenty of information until he left hospital but now feels a bit isolated.

When I first became ill I went to a local hospital the, we were kept in touch with everything that was going on all the time, we knew exactly what they were doing, what they were looking for, what they'd found, it was really good. When I transferred to have my biopsy that perhaps wasn't quite so good but certainly when they'd diagnosed me the surgeon actually phoned me up at home and gave me some information, and then asked me to go in to see him, to give me all the information on that. When we went to the hospital to have the surgery the extra pleural pneumonectomy then it was absolutely brilliant. The nurses on the ward, because it was a specialist thoracic ward, the nurses seemed to know as much as the doctors. There was a doctor on the ward twenty four hours a day and there was, they never, well it was never too much trouble for them to sit with you and explain what was going on. Now since I've been discharged it's, we've felt a bit isolated.  

Having worked with asbestos he explains the process of claiming compensation from his employer.

Yes as soon as I was diagnosed with mesothelioma the lung cancer nurses and the doctors who I was seeing all said that I should be looking into claiming compensation because mesothelioma is generally only caused by exposure to asbestos. And if you've been exposed to asbestos as I was, probably thirty years, ago it's generally down to employer's negligence. At the time, because I was still coming to terms with being diagnosed with a terminal illness I didn't want to sort of muddle my mind up with other things. I thought that claiming compensation would involve forms and things like that but in actual fact one of our nurses, although she wasn't allowed to recommend a solicitor she suggested that there was one in our local town who was a specialist in that field. And I spoke to him on the phone and he seemed very understanding and seemed to be very knowledgeable about it. And so we decided that we'd go and see him and it's been very easy. He, because he's a specialist in industrial disease claims, he's very understanding, he knows that he can't talk to me for too long because I get tired and generally he's just presenting things for me to approve and sign. We've done a lot of that by email which has made it easy and the, the claim has been going really well. And when we first went to him I said that  I didn't want to have the bother of claiming and he said to me "Well you have to decide whether you want to make the claim so that you get the money in your lifetime or whether you wait until you die and your dependants claim." And so that was, we thought well we'll probably want to claim to give us a quality of life for the rest of the life we've got. And so it's all been fairly plain sailing.