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Initially he had repeated chest infections that did not respond to antibiotics.
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Yeah well I first noticed, first took ill in December 99 for the really severe chest infection. Went to my GP, had a course of antibiotics, which was like a seven day course, completed the course and the chest infection cleared, and then five days later it was all back again. Went back to my GP, who asked me if I'd finished the course and I said, 'Yes, of course'. Gave me another course of antibiotics, completely finished that course, completely cleared up, five days later back again. So she sent me down the hospital for a chest x-ray. |
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Describes the 'horrendous' experience of having a bronchoscopy via the throat, without a sedative.
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And then did they send you off for more investigations after that first chest x-ray?
No I didn't have to. I had a camera inserted down, normally they take it through your nose.
Is this a bronchoscopy?
That's right, and you don't have too many problems but for some reason (laughs) the tubes in my nose are very narrow and they couldn't do it through my nose. The camera is about as thick as your little finger so it had to go down through my throat. And they place like a plastic tube in your throat so that you can't bite onto the camera and that was absolutely horrific. That was worse than anything I've ever had, because you're actually taking this into your lungs. And then they wash your lung out while they're doing this and they take the fluid back out of your lungs and then they send that fluid away for tests as well, as well as doing a very tiny little biopsy while they're in there. So that was horrendous.
It starts off with you can't eat or drink for probably about fourteen or eighteen hours prior to that. When you actually get to the hospital you have a choice, well you don't have a choice to start with because initially they're going to go down your nose so it doesn't affect the way you react, but as soon as they found out they couldn't go down my nose I then had a choice of whether I wanted to have an injection to sort of make me a little bit drowsy or just a throat spray that would you know dull my throat. Because as soon as the tube starts to go down your throat you want to heave as if you're going to throw up. And it's so difficult to swallow, keeping swallowing, as you're swallowing the tube is being pushed in. And it's very, very difficult not to do that.
So what did you choose?
I just had a throat spray. I've got a thing about, I don't drink at all, I never have drunk so I've got a thing about having all my faculties with me if you know what I mean. I don't like the idea of having an injection that would make me dopey and not know what's going on.
So what did it feel like going down?
It, the initial when it first goes into your throat it's not too bad because it's, as I say your throat is sort of numb but then once it's, starts going further down the back then you can actually feel it going down and it is very uncomfortable. But I must add that I am an exception because my nose is, the tubes in my nose are very small. Most people have it down through their nose and it doesn't bother them.
And then afterwards?
Yeah while it's happening it's like a drowning feeling, it is, it's an awful feeling. And you feel as if you're not going to be able to breathe ever again but it soon passes. |
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Immediately after he had the diagnosis neighbours tended to avoid him because they did not know what to say.
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What about neighbours, can you talk about this to neighbours?
Yeah, when I first had it certain people that I've known, I mean I've lived on this estate for just over forty years and certain people will almost cross the road not to talk to you because I think they were frightened of what to say, didn't know how to treat you.
How did that make you feel?
That makes you feel very uncomfortable but eventually everything is back to normal. In fact there's one little old lady just a few doors down she rings me up. I go round and see her virtually every day to see how she is, she's eighty four so I always pop in and see her and she rings me up if she's got a problem. But she rang me up yesterday and she said, "Haven't seen you for a couple of days," because I've been actually busy thinking about moving house so I've been looking everywhere for some, new premises and she said "I haven't seen you for a couple of days, you've not been poorly have you?" So I had to go pop round and see her to show her that I wasn't poorly yes.
That's nice.
Yes.
Yes so interaction with other people can be tricky to start with.
Yeah it can be tricky to start with. I think because they don't know what to say they're a bit worried about putting their foot in it sort of thing but no. I suppose with some people it can be a bit awkward but with me it just didn't bother me at all, yeah. |
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He got all the information he needed via the nurses, who were 'brilliant'.
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Did you know much about lung cancer before all this started?
No I didn't know anything at all. Just basically what I'd heard on television or read about. I didn't know too much details, I didn't even know there was different sorts of lung cancer.
And were you given information at the hospital?
Yeah more so from the lung cancer nurses, they were absolutely brilliant. There were two specific nurses at our hospital and you're allocated a nurse. The girl I was allocated was absolutely brilliant, she went into all details, any questions I had I could talk to her about. She gave me a card with her own telephone number on at the hospital and if I needed to speak to her any time I just rang this number and she would get back to me straight away virtually. Very good indeed.
Did you go searching yourself on the internet?
No I didn't to be honest with you. No, I'm not much of a computer buff although my daughter is, so I didn't look too much into it. I suppose to a certain extent you don't really want to know too much about it, although I know a lot more now than what I've ever known about it. But no you don't, that was me personally I didn't want to know too much about it, yeah. |
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Describes acupuncture and how it helped.
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Have you ever tried any complementary therapies?
Yeah, at the moment I have acupuncture, at the moment usually about once every fortnight. But that is the only complementary you know medicine that I've ever tried, acupuncture.
Can you explain about it and why you have it?
Yeah I go to, because I still get a certain amount of discomfort. Sometimes it can be related in pain, sometimes it can come through from shortness of breath and believe it or not acupuncture does help. The acupuncturist that I see also does massage. Now for some reason I don't know, I don't know whether it's just me but I find that she finds that my muscles are quite tense in my neck and my shoulders, whether that's down to the illness or not I don't know but she does help me tremendously, yeah.
And what's acupuncture like?
It's not too bad at all, it's not painful, nowhere, some, obviously some of the needles can be painful and it can make you jump and she just smiles at me and says "You wasn't expecting that one was you?" But it's quite, it's quite good. Most, I mean the most I've had, I think I counted seventeen needles in me at one stage that I didn't even know were there.
Where does she put those?
Some of the needles, funny enough are on the opposite side to where I have the operation believe it or not. Yeah, some of the needles are mainly on the left hand side and on the, she puts needles in my feet, in my hands. I've even had little needles put in the corners of my eyes.
And that seems to ease the discomfort in the chest?
Yeah, yeah it does, it does help yes. |
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He was short of breath after his pneumonectomy but increased his lung capacity with physiotherapy.
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So what was it like when you got home?
Getting home initially was quite frightening really. Because I think when you're in hospital and you've had all this done to you and there's people there all the time you don't worry too much about it. My daughter moved back home to stay with me for a couple of weeks, when I did come home but she's obviously got to go to work and then living on my own it's quite nerve-racking to start with. And then you think oh, any little twinge that you've got, you start worrying about. But you get over it, you get over it yeah.
Could you walk around the house straight away?
Yes, yes, yes no I mean I haven't got an up, a downstairs toilet, I'd got to go you know upstairs to the toilet each time I went to the toilet so yeah I was up and about. And because you're walking very, you walk quite slowly to start with so you don't really notice being short of breath. It's not till you start getting back on your feet and start wanting to do things that you realise how short of breath you can be by just having one lung. And in some respects I'm very lucky because of the job that I did I had like a follow-up and I went away for two, two week sessions up in Cumbria which is complete four weeks physiotherapy.
Wonderful.
Yeah is quite lacking for anybody else. I was very, very lucky indeed.
Because of the job they were paying for it do you mean it was a special thing?
No, yeah well I was actually, I've actually be in the Fire Service yeah and the Fire Service have a benevolent fund that look after working firemen that are injured, retired firemen that have a problem or an operation or are injured even and you know all their families and the children. They've got rest homes. But the place that I went to in Cumbria was absolutely fantastic. I got, you can't take family you just go on your own and they've got space for about forty people there. And then you go into different groups. The group I went into was obviously for the slower people because they'd only got one lung. But you've got physiotherapists that are on hand all day long and working with you to improve the lung capacity of the lung that I'd got left. Now when I first went up there they did lung capacity readings and they were quite low and when I came away after two weeks I'd virtually doubled my lung capacity. |
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After his pneumonectomy he developed a fistula which healed gradually.
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When I first had my operation I was going back quite regularly because I had a small problem in so much as where they'd done the operation inside, if you can imagine your throat branches into two sections, one to each lung, where they take your lung out they actually cut it out and then they cover that bit of tube up with a piece of skin I suppose for want of a better word. Well I had what they call a fistula, which is a little hole in that piece of skin which was creating quite a little bit of a problem. Because once you have the operation if everything goes according to plan then the side of the chest that you have your operation does fill up with a kind of fluid, so it takes up the space of where you lung was. But that wasn't happening with me so I was going back to the hospital quite regular. I then eventually went down to three monthly and then six monthly and at the moment I'm going back every twelve months. I went back in January of this year and I was told then you know we'll see you in January of next year. |
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At one point doctor-patient communication broke down completely because of misunderstanding and medical terminology.
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How was communication between you and the doctors?
Um… Not too bad actually. I had one problem with one doctor initially before I had my op and I stormed, I stormed out of his office. I mean my son and my daughter could not believe what I'd done. My son said to me, "You can't do that," I said, "Well I've done it," I said, "I just wasn't prepared to talk to him." Because he'd given me what I thought was a totally different diagnosis to what the original specialist had given me. But I think he was just talking a little bit more technical than what I understood. I did meet him again at the hospital later on and he did explain to me that we'd sort of got off on the wrong foot and we sorted all you know our differences out.
Were you upset because you felt he was speaking a language you didn't understand?
No I think it was because he was, originally he was telling me there was more wrong than what, I felt he was telling me there was more wrong than what there really was. And it was like, it was like he'd just hit me on the head with a sledge hammer and I just blew my top. And that's how it affects you to start with you get very; like your emotions are all over the place and you can lose your temper very quickly.
Yeah he just started talking to me a little bit too technical I think and it was words that I just did not understand, words I'd never even heard of before. And this is one of the problems. I think they need to be very, doctors and consultants need to be very basic with the patients. I mean we're not doctors, we don't know do we, we only know how we feel. So if they can explain it in more layman's terms the better it is. |
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He was upset that he was treated in an unusually sympathetic manner before he knew the diagnosis.
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You wanted to add something?
Yes, when I initially got back to the hospital and had been diagnosed; you normally go and hand your appointment card in and they tell you to put it on a desk top and then you go and sit down and then the nurses when they pick them up they actually call people's names out, "Mr Jones can you come," or, "Mr Smith can you come," but when it came to mine they actually came across and gently whispered "Can you come with us." And you know straight away that there is something wrong and you're not being treated the same as everybody else. Although they think they're being so nice it's quite upsetting to find that they are being like that and you're not being treated normally.
Right.
And you know, a big lump comes in your throat and that's quite different. That was actually brought up at the support group and it's happened to quite a number of people.
That's interesting.
Yeah
So at that stage you'd rather just be treated like everybody else?
That's right, yes just treated, yes just call your name out and go in, in the normal fashion. |
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Physiotherapy, including cycling, swimming, and deep breathing exercises helped him increase his lung capacity.
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What sort of exercises do they suggest?
Some of the exercises were swimming, some of the exercises were in a sauna, like a sauna type pool, which is quite warm water which does help, which did help me with my frozen shoulder. I even did some cycling on static on a static bicycle and I did a lot of exercises using elastic, would you believe? It's a special type of elastic that you do actually moving your arms and your shoulders and also deep breathing exercises which is quite important.
Would you like to show us how you do deep breathing?
Most of my deep breathing I actually, I try and take in a deep breath, as deep as I can and hold it for as long as I can then breathe out very slowly. I try and do this, I still do this to this day, as soon as I get up in the morning before I even do anything I do some deep breathing exercises just on the edge of my bed. Get myself dressed and I come downstairs, I usually make myself a bit of breakfast and then I do some deep breathing exercises then as well. I think it's quite important to try and, you need to use what lung you have got left to its maximum capacity. Most people, even with two lungs you don't use both lungs to their full capacity, you probably only use you know fifty percent of your lung capacity, you know in normal every day living. So when you've had this operation you need to expand your one good lung and try and compensate a little bit. |
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He obtained Disability Living Allowance (Mobility component) after an appeal to a tribunal.
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Yeah, financially I wasn't too bad because I have my pension from the Fire Service but I did initially apply for a Disability Allowance and initially I was, they send you a book out and it's about eighteen pages of all so stupid questions, and I applied for it and was turned down. And then probably the following year I was told by somebody that had got a Disability [benifit], that I should be getting it because I was worse than them. So I applied for it again and I was turned down. I then asked them to re-look at it, they did do and I was turned down again. So I finally took them to a tribunal. When I got to the tribunal I was awarded it by every member of the tribunal and it was backdated a whole year. So I was quite lucky but there's an awful lot of people out there miss out on benefits because they don't apply for them at the right time. As soon as you're told that you have lung cancer you should apply for your benefits, and hopefully you should get them straight away if you apply. Because when you're initially told; it is life threatening and you should get it instantly. I mean if you've, like with me I've never been out of work in my life, I've paid into the system all my life and then just to be told you're not entitled to it
What's that benefit called, Disability Benefit?
It's, I actually get Disability Living Allowance on the Mobility side of to help me, it helps me pay for my car so that I can go shopping. I live on my own so I have to do my own shopping for obvious reasons. Now I couldn't go to the local shops and carry my shopping back without my car, I just could not do it, I would pass out through lack of breath.
And that's a Government benefit is it?
And that's a Government benefit yeah Disability Living Allowance, I get the Mobility side of it which helps me financially pay for the car. |
