Interview LC12

Age at interview: 43

Age at diagnosis: 43

Brief Outline: Diagnosed with non-small cell lung cancer in 2002. Left lobectomy (lobe of left lung removed) in 2002.

Background: Rigger (retired), living with partner, 2 children.

His lung biopsy was very painful in spite of the local anaesthetic.

A CT guided lung biopsy is a procedure whereby a biopsy cutter is put through the chest wall. You're given a local anaesthetic and to guide the biopsy tool to the site they use the CT scanner so it can take two or three go's to actually find the actual tumour site.  It's a very painful procedure, or can be a very painful procedure if the local anaesthetic doesn't reach the pleura, which is the lining of the lung. Obviously they have to puncture that to actually get to any tumour site. It takes about half an hour in total time usually, you're laid down in the CT scanner bed and the procedure is going on and they place like a catheter which guides the biopsy tool into the chest lining, into the lung lining which obviously sticks out of your chest whilst this is all going on.  

He became an 'expert' on lung cancer mainly through the Internet.

Did you look for information yourself, where did you look?

By the time I had my surgery I was probably an expert on (laughs) on lung cancer. Exclusively on the net basically, I downloaded loads of different stuff from the net. As well as through the cancer team, who give you loads of information if you ask them. Obviously in some cases they won't offer, so unless you actually know what questions you want to ask, the information wouldn't be offered. And I don't think that's a conspiracy theory kind of thing, I think the reasons for that are probably you know, manifold it could be for any reason. It depends on the level of technicality that you want to get into. I mean obviously it's a very specialised subject, so if you're dealing with well any part of it, whether it be the treatment or the actual workings of lung cancer or the surgery then there are, you can access it at many different levels, and depending on the type of questions you ask would very much depend on the type of answers you'd get. So, I mean for us it was, we just downloaded everything, even down to looking at procedures on the net, accessing medical websites and exploring alternates for treatment.  

He thought it important to tell his children the diagnosis, and they have been very supportive.

You've got two fairly young children, would you recommend to other people that they would tell their children about having cancer and how would they tell them?

Tell them, tell them. Tell them, tell them honestly everything you know, it's the only way. If you've got any respect for your children you'd tell them. I think that it's very much oh I don't know, I could be getting into deep water here but I have an unconditional love I guess for my children so, we're a very close family, and they're very supportive of me. They're very intelligent, children are very, very intelligent and they don't miss things like that. And it might even be unspoken but your body language, everything will tell them that there is something wrong, you know irrespective of whether you verbalize it they'll know that something is wrong and if you don't tell them then you know it just sets up a whole series of complications for both them and you later on. Because obviously if death is an issue then you know I think they deserve to be in on it, deserve to have some kind of, you know I'm sure, well I hope I'm very important to them so I think it's important that they know that I'm alright or that I'm not going to be alright or whatever. I mean obviously the outcome in my case was very good but I'd still tell them if it wasn't.

Describes what happened in the ward and operating theatre before his lobectomy.

I was in hospital for five days, initially they take you in the day before your surgery so obviously there's a certain amount of monitoring done on your state of health, psychological state and so forth and so on. You're not fed, what they call nil by mouth from midnight the day before your operation, so for twelve hours you wouldn't have eaten anything obviously this affected, could be affected by anaesthetics. They give you a pre-med which is basically just a way of relaxing you, it's supposed to relax you and then they get you ready for theatre.  

Then they wheel you off in your bed (laughs) through the corridors to the theatre suites where you're, you're taken to like a reception area where obviously your surgeon, the anaesthetist and so forth and so on have gathered. And they would take you off to prepare you, they transfer you from your bed onto like an operating trolley. There are several lines going at that point, IV lines for various reasons obviously you have lines which they use for the anaesthetic and others that are feeding you saline, fluids basically whilst you're on the operating table. There's also one into your jugular vein, I believe this is for, if they have to, if you crash whilst you're in surgery they have a line that goes directly into your mainstream, bloodstream through your jugular vein. I think that's probably because it's so quick, the idea is obviously that anything that they give you reacts very quickly.  

Describes what it was like to have a drain removed after his lobectomy.

And then when did the drains come out?

The drains started coming out, I was actually in hospital for five days, so day three would've been the first one, which would've been the lower one, obviously they put one at the top and one at the bottom. The one at the bottom is obviously gravity fed fluid, the other one is obviously taking it directly from the operation site. The first one comes out, it was, let me think about two minutes and it's all over and done with, literally. I was actually watching, it's done by a nurse and literally they just pull it out and stitch the skin and that's it and it's, I presume it's fed through the side of your, in between your ribs so it's quite strange, a bit of hose pipe being pulled, and that's what it looks like its just a bit of plastic hose pipe, nothing special about it you know it was quite simply that.

Comments that a named nurse may be a good idea in principle but does not work in practice.

Yeah I think there's, what is actually described in terms of the administration as to how nursing is done and how nursing is practically done seems to differ somewhat. There is this thing called a 'named nurse', this is an example I guess, they make huge, they put a huge focus on the fact that when you go into hospital you have a 'named nurse'. That doesn't actually work, I mean it's very good in principle and you can see where that concept came from and it certainly didn't come from the ward. It's obviously a management thing or it certainly appears to be, because on the ward your 'named nurse' is whoever is actually on duty and they change staff so quickly that there is no such person as a 'named nurse' because they're all nurses and they're all there and they're all treating you or they're all dealing with you although obviously they are given certain areas to work in they're still changing on a daily basis. So it felt a little bit to me as if they were trying to introduce some kind of system from the management point of view, this was being foisted onto the nurses but the nurses weren't actually picking it up, and using it, and I think that's what I mean by a two tier system. What management were asking is one thing, what nurses were actually doing is another. I don't think there's any lack of treatment by the nurses, I think the way they deliver it is different to the way that it's perceived in the administration.

Did you feel there was a problem of continuity?

Oh yeah definitely yeah. I think they're very under-resourced, very under-funded. 

Says smoking is addictive and research for lung cancer is relatively underfunded because people are blamed for their illness.

You said you felt that lung cancer patients were blamed perhaps because they're smokers?

Mm

Were you a smoker yourself?

Yes I smoked for 20 years.

And did anybody ever actually say to you?

Well yeah, I think they probably did you know. I think people are made aware of the fact, I mean they even write it on the packet don't they? But I think it's a strange thing, I mean I grew up with my role models were people like Humphrey Bogart and people like that and I think if you see Humphrey Bogart in most instances he's got a cigarette stuck in the corner of his face and I think role models like that when I was young portrayed smoking as being something both very acceptable socially but also a very cool thing to do. So I think that's what probably starts you, what keeps you going obviously is because it's so addictive. I'd actually given up smoking four or five weeks before I was diagnosed as having lung cancer so again another twist to my story I guess. It's a very, very difficult drug to give up. If you don't smoke it's very difficult to relate it but I would put it on a par with, I would say, although I've never taken heroin I would put it on a part with heroin addiction, in fact probably as destructive as heroin if not alcohol as well. I see little difference. You know if you're addicted to something you're addicted to something, irrespective of what that medium happens to be.

Has anybody actually said to you "That's your fault"?

Not directly no, but I think you know just looking at what goes on. I'm very involved in lung cancer from a patient's perspective, what I see is like I say is lack of funding and if you compare research that's happened for, pardon me, for breast cancer for instance and the amount of money that's allocated to breast cancer for research and screening programmes and so forth and compare that with those of lung cancer there is a huge difference, there is a massive difference to the point where one has to ask the question why is there you know such a difference and you know I can only assume that it's because it's self inflicted and it's because it's smoking related.
 

Says that because most patients are not around to talk about their illness misunderstanding persists and keeps the stigma rolling.

I think it's progressional, I think it's a sliding scale. I think if you've got cancer I think that to be told you've got cancer is not a very nice situation to find yourself in.  I think from the outside looking in if someone says to you they've got cancer you think, not long to live, that kind of thing, we all know you know about chemotherapy and so forth and so on, that kind of awful side effects to chemotherapy and what people go through. Very often people die and I think that's a stigma in itself and I think you're stigmatised because possibly people can't deal with that because they see you as someone who's going to die soon and they can't deal with that kind of situation, it's easier for them to stand away from that.  

With lung cancer it's even more stigmatised I think because it's perceived as a self inflicted injury because of smoking, obviously smoking probably makes up 97% of lung cancer patients and because of that I think people tend to think well, you know, it's your own fault for having smoked. Which is true in one respect however I could argue against (laughs). But the whole thing about lung cancer is people don't live long enough to be able to say too much about it, about the treatment, about how you feel. The actual cancer journey for someone with lung cancer can be very short so I think in a lot of instances people just don't have the time or the energy to put into talking about it because they're so busy trying to deal with the enormity of the fact that they've possibly got a very short time to live. The prognosis in a lot of cases is really frightening it's, the onset of lung cancer from diagnosis is very rapid and because of that I think you know there's so few lung cancer patients available to talk about it which in a way keeps the stigma rolling because it's not discussed, people aren't knowledgeable or, understand it for whatever reason. 
 

Argues that more advice should be available so that people know which benefits they can claim.

Were you given any information in hospital about sort of social security, if you needed help at home, that sort of thing?

Yes, we were, and the problem here is that you have all this information coming in, and to actually take it all and deal with it is very difficult, so I think although I'm sure we were given, I actually had a conversation with somebody about this, and it is there, they give you a booklet, or several booklets about different things and so forth and so on about benefits and so on and so forth, but I just don't think you take that kind of information in.

It's later when you start to need it more, but then of course it's too late because it's very difficult if, if you have surgery and you go through all of this stuff, may be a month, two months down the line you suddenly realise that, ah hang on a moment I should be doing this or that and that and this, any claim for any benefit will start form that point onwards, whereas you should really be hooked into that system from the day of your diagnosis.

And for me I think I would like to see that, I would like to see someone say, "Okay, irrespective of your situation, we'll book you into a set of benefits now and we can take you off them later if they're not applicable." But if you don't claim for them then, you're not entitled to them, and as a lung cancer patient you could be dead before that happens, so you wouldn't even have access to any benefits for a partner for instance so that all then becomes really difficult, you wouldn't be entitled to certain benefits towards funeral costs for instance, and so forth and so on.  

You have to do this, it's not made clear to you and if somebody gives you a booklet that says "Right here's all the things you can claim for', that's great so you know what you can claim for, whether or not you can actually get that benefit is another thing altogether. We claimed for two or three benefits before I was actually told which one I should be claiming for only to be refused those three benefits having filled out this huge information pack of you know what's this, what's that, all the rest of it.  And then they just write back and say, "Oh you're not entitled to that benefit because you haven't done this," or whatever, "You don't qualify for that because you're not within this criteria or whatever." They don't tell you what you can't do until you actually claim for it. It's a really weird system and it must cost millions whereas if there was somebody there who says, "Okay this is your circumstances, this is what you need to claim for," and that should be it.

There should be specialist advisors and I've been told that there are, however I wasn't able to access them so it obviously needs addressing.