What about other investigations, did you have to have a PET scan?

No, no I just, I had the CT scan and obviously I’d had had a number of chest x-rays and I continue to have x-rays while, even while I was in hospital, every day I had an x-ray.

And numerous blood tests?

And numerous blood tests yes;

For somebody who’s a bit nervous about having a blood test would you mind explaining in detail what it’s like to have a blood test;

(Laughs) well the, they have this little container with a needle in it and, which is sheathed and then they screw in a different coloured like small test tube with a coloured cap and this determines what you’re having the blood tested for, I think theres four or five different colours. And so they can actually do different tests with the same needle and they just take that test tube out and put another one in and it’s quite, they say a little scratch, it’s a little bit more than that but nevertheless I don’t find it painful. But I’ve been having that many over the past four years that my skin where they go in has got quite hard and so we change arms every so often and see if we can give the other one a bit of a rest. But both sides have now got hard. I mean I’ve had one a week for the past four years, so, well almost, and then several more when I was in hospital.

And then you had the bronchoscopy?

And then a bronchoscopy.

Can you explain what that was like?

Yes I was dreading that and that turned out to be an extraordinarily interesting experience; to be pacified with a local anaesthetic and the injection of temazepan in the back of your hand. It’s very comfortable, and I was curious and I was straining to watch it on the television screen, it was fascinating. They never could get to the tumour because that was, the tumour was located peripherally in the lung and therefore the tubes are too small for the passage of a camera but they knew pretty well where it was by then.

So what did they do exactly during the bronchoscopy?

They spray a local anaesthetic onto the back of your throat and they either pass it, the camera up your nose or back through your throat, in my case they went in the back of my throat. And they were intending to take a biopsy at the same time but they were able to take, they couldn’t do that because they couldn’t reach the tumour, but they took something called a flush down, they washed some of the lining of the lining of the lung with water which gives you a coughing reflex which is fascinating to watch on the screen. It’s a violent, a very violent thing when your lung contracts and but the actual discomfort, I don’t remember at all, I don’t remember feeling any discomfort during the procedure and the staff around me were friendly, informal and chatty, the nurses, the technicians, the doctor, everybody. It was like something on a school project, just a fascinating thing, like being in a science museum or something.

In August 99 they found that the temperature was quite high and it’s not going for the last two or three months so they booked me into the hospital and did the bronchoscopy. The day before the bronchoscopy in the evening, after 10 o clock, I was not allowed to eat or drink anything. In the morning they took me to the department and I was sitting on the chair. They put a tube in my throat and tried something but I was uncomfortable so they removed it out and gave me anaesthetic, local anaesthetic and then they did it and I was quite alright.

But the results were not all that promising and they couldn’t find anything so I was sent home. The fever didn’t go. After a week, again I was admitted into hospital and this time the bronchoscopy was quite tough, they did tell me in advance that they were going to put a very hard tube, not like before, so they gave me local anaesthesia and took me to the theatre. Again they give little anaesthesia in the throat and put the hard tube, it was a bit painful but may be because of anaesthesia I didn’t feel much. They did everything, this took about half an hour, and within another half an hour of rest I was taken back to the bed, but after two hours I started feeling a little bit of pain but that also they gave me some pain killers and it went off. But the results were very good, and in the evening I was told that we will get the full results two days later. After two days I was told that I had lung cancer and they’ll call the specialist and senior doctors to come and see me again.

So you had three bronchoscopies and they didn’t know what it was?

Yes the bronchoscopies were very easy, very well done indeed by the doctor and his assistants. There was no pain attached, just a slight discomfort when they asked you to take some fluid to drink. You did not feel it going down at all and the end of the result was; they gave you [a sedative], just a, not even to put you to sleep really, just to quieten you, while they carried out the bronchoscopy. And from that, they were able to discover what it was.

Did they put the tube up your nose for the bronchoscopy to have a look?

No they put it down my throat which I assume was a small camera. But nothing went up my nose at all. And I just, as I say I had no idea what a bronchoscopy was and just as I say I was not put to sleep, I was just in a semi dazed sort of condition. I felt no discomfort at all with the camera going down into my tummy, down my throat, and I was very disappointed with the end results.

It went into your lungs I guess, the camera?

Yes, yes as far down as they could get it and after three bronchoscopies then they could not decide what the thing was. In the finish the specialist decided that he would have to operate to remove what was obviously a growth.

The bronchoscopy goes up either nostril, they put a tube with a camera up one nostril but they’re putting oxygen up the other nostril so it’s, you don’t panic you can breathe (laughs). Everybody’s panic is they can’t breathe, which was mine obviously, asking questions beforehand you know, ‘How am I going to breathe while you’re doing all this?. But it was all explained quite detailed. They give you, they put a cannula in your hand, like an injection where they can just, they give you like valium.

A sedative is that?

Sedative yes to, they don’t actually knock you out but you’re not with it, you know what’s going on but not really. It’s a very, very strange sensation but not unpleasant. It doesn’t hurt, you’re told, you’re given instructions what to do and as long as you follow those instructions to the letter it will not hurt. When they get to your vocal cords they stop and they’ll ask you to swallow and then they go past your vocal chords so they don’t do any damage and then they just keep asking you to swallow. They push the camera down and they can see, and me being a nosy person I was very annoyed that I couldn’t see either (laughs). But no it was, it was not an unpleasant experience at all. It doesn’t last very long, about 15 minutes you’re in and out, you’re, oh before they put the camera down which I forgot to say, before they put the camera down they do spray the back of your throat so that you have no feeling there, you can’t feel the camera, you can’t feel anything. So it doesn’t hurt at all.

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.

So can you tell us about the bronchoscopy from the beginning?

Alright, we went into the theatre and I was lying flat, it looked like an operating table. The, presumably a doctor, she didn’t look old enough to be one, they put an, (pause) injection into your throat. You’re wide awake, theres, not given even anything to keep you calm, no sedatives or anything and I think it was her first day of ever doing them. She had five attempts at me, and by this time I wasn’t very happy at all (laughs).

Was it an injection in your throat or a spray?

No the injection goes through into your throat, it’s sort of, it’s sprayed into and you’ve got to cough which that is then the anaesthetic for them to put the scope down.

So where does the injection go in?

Into your throat, [points to mid throat area] sort of yeah just below your voice box really.

How did that feel?

Painful, and of course with her having sort of five attempts at it, twice she tried with me lying down, then they sat me up and I had to put my head right back.

What was she trying to do, can you explain?

She was trying to get the needle into my throat, and in the end the consultant he said, “I’ll do it.” He was looking at the monitor, that was what he was there for to look at the monitor but he in the end didn’t have much faith in her, I don’t think that she was ever going to get it right. And of course I was getting very agitated by then and so he did it and he did it first time and I didn’t feel a thing when he did it. I had to cough, which it’s a real cough and splutter, which is the anaesthetic, that it just deadens your throat down and they put the scope down. You don’t feel anything then at all.

Did anybody explain to you what was going to happen before you went down for the bronchoscopy?

No, whether that’s a good idea or not I don’t know because if I had to have to another one I should kick against it or say “Well if you’re going to do it you’ll have to put me out,” because it was a terrible experience. But other people have had a lot more that I’ve spoken to since and you know it’s not pleasant but they didn’t have the experience that I had so

You’re the first person that’s told me that you’ve had an injection into the throat from outside. Other people have had sprays at the back of their throat.

Yeah, no this was, it went right, well I mean the bruise was there, sort of just down at the bottom, there.

Poor you.

I mean alright it didn’t last long sort of twenty four hours later I was alright but I mean the bruise was still there (laughs) as if I’d been punched in the throat.

In my case the other thing that they do, there was two things they did, they did a, and I don’t remember the name of this one, but they more or less they used ultrasound on my back to gauge where the liquid was in my lungs because they were wanting to get a sample of the liquid to see if there was any cancer agents in the liquid. So they pass a very fine needle through the wall of your back using the ultrasound as a guide and extract some of the liquid for pathology and so that they can have a look at it and see what the liquid contains. So they did that on me and that was; I was lulled into a false sense of security in that in as much as it was a very pretty young doctor and she said it wouldn’t hurt and it did (laughs). So my advice would be take a local anaesthetic on that, which was offered but she said it wouldn’t hurt and I believed her (laughs) she got me.

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.

Yes, they numbed my throat and then put a tube down into, obviously into my lung. I didn’t feel anything but that didn’t show up anything there. So then they said they would give me another biopsy through my lung, through my chest. So they did that, they also numbed that and I was under the scanner so that they could see what they were doing. And, they numbed that and then I could see a long needle and the gentleman told me to shut my eyes! So I closed my eyes, I didn’t feel a thing and then they said, ‘All right’ and it was done. But when I came out of the, that room, I had to wait for an x-ray to be done and after a little, just a short while I felt very, very short of breath. So I was helped down to the x-ray room, they took an x-ray but I was having a lot of trouble breathing so they put me on an oxygen mask and then I was told that my lung had collapsed. Well I didn’t know nothing then until I woke up in what they called the recovery room and they’d put a tube through my side and a something drainer or something and I was kept in hospital for four days. But I was in no pain and I wasn’t worried.

With my first biopsy, I was told all about it and I was told that it was only one in twenty that the lung could collapse with having the biopsy but as it happened it happened to me. And my lung collapsed so they had to insert a small tube in my shoulders, somewhere around my shoulder and they withdrawed just over a litre of fluid. Fluid or air I don’t really know what they withdrawed but they did say just over a litre.

How was that? Were you-

It wasn’t too bad, it wasn’t, the biopsy itself was nothing. All you felt was just a sting but the withdrawing, that wasn’t too bad neither after he’d got the little tube in that wasn’t- it didn’t feel at all bad. They’re very nice though, They all these doctors and nurses are when they’re dealing with you.

Did it worry you when they-

Well, when the lung did collapse it was very pain- it’s painful but when, once they withdrawed the whatever they withdraw it goes back to normal and you feel quite alright. I was allowed to go home then straight away. So there’s nothing to worry about with that.

So you were aware that something had happened?

Well, I was aware after they’d done the biopsy I was aware that something had happened because I felt in pain when I moved and they told me to sit still. SoThat’s all.

The CT scan again it’s a totally painless operation, or not an operation it’s not an operation, procedure I should say, where you lie on a flat bed, they sort of prep you by putting a shunt into your vein. And then what they do is they project the bed that you’re lying on into this tunnel and it’s a confined area and I could see if you were claustrophobic it could be a wee bit worrisome but it shouldn’t really affect you because I mean you can see either end of the it you can see through it, you can raise your eyes back and you see the ceiling at the other end. Theres, you know theres no real need to be concerned about it, and then at one point of the procedure or when they’re taking x-rays they pump a dye into you to give you a resolution on the x-ray so that they can differentiate between the different bits of tissue that they’re seeing. The dye itself is totally harmless, I’m diabetic it had no impact on me whatsoever other than to make you feel like you’d peed yourself. You get a warm glow round about your waterworks, but I can assure you haven’t peed yourself, it’s just a feeling you know. And it’s, as I say totally painless, and really neat slides you get from it, it’s quite something when you see them after the event. It’s almost worth having it done just to get a look at the pictures you know it’s quite phenomenal the human body.

Yes, you go into a room and it’s like a monitor in front of you and a tube and you put the tube to your mouth and you have to blow in as hard as you can for, well as long as you can really, excuse me. There again they don’t tell you what the result of it is but by the time you get to the end you’re blowing so hard your eyes go crossed. And then again theres no pain attached to it, only that it makes you a bit breathless perhaps.

A bone scan is very similar to any other scan you don’t have to take your clothes off, you can be scanned fully clothed and unless you’re claustrophobic it’s not an unpleasant experience. The part that’s like a tunnel goes, starts at your head and gradually goes down your body. It takes about twenty minutes and as you come out of the tunnel or the tunnel moves down you, you can usually watch on a screen what’s happening, you see it gradually moving down your body. That’s about all there is to it really.

No I didn’t have a bone scan, I had a head scan.

How did they do that?

Well again it was exactly the same as the CT scan I had. It was instead of being a CT scan for the lungs it was a CT scan for the head. So you just laid on this table and the thing went back into the doughnut, not the tube, so you’re not enclosed, light and airy, you just lay there and I looked up and I saw a red light going across like that, and the nurse said “Right when you’re ready well take the pictures,” and I said “Is it alright to keep my eyes open?” she said “Yes, it won’t do any harm,” and the red light went bum, bum, job done; No pain, no anything.

Right.

In fact it was more of a nuisance queuing outside to get into the actual you know queuing in the waiting room, that’s more of a nuisance because you sit there for half an hour, the actual scan took about a minute or thirty seconds even.

Yes I don’t like the MRI scan which I’ve also had, where you go into the tunnel, that I have had twice and I just, I didn’t like that I must, for no other reason that I won’t admit to suffering from claustrophobia but I didn’t like that. But the CT scan, no problem whatsoever you just lie on a table and it moves backwards and forwards. And sometimes they’ve had to inject me with a coloured dye to lighten up the inside and then again that was no problem, that was no problem.

But the other thing that I had happen to me was that they decided that more or less prior to the operation, because this was towards the end when they were deciding that they were going to operate, they decided that what they really needed to know was whether the cancer has got into my lymphs. So they did a mediastinoscopy which is where they cut your throat down here, you’re under a complete anaesthetic at this point, they cut your throat about here and they peel it back and go down inside the chest wall to have a look with a camera. Not dissimilar to the bronchoscopy one but slightly bigger and brighter lights and then have a look around in the area on the outside of the lung etc to find out if there is any cancer cells present. They can also, theres a grab, a snip thing that they can take some samples for pathology and check that, whether theres any cancer agents or cancer present in the samples that they’ve taken. That in itself is not discomfort, you just end up with a, depending on how good the stitches are just a very little scar and it’s tender for a couple of days but not anything to write home about, very simple really.

So all this time nothing showed up on the X-ray?

It did, I had a shadow on my x-ray, but they just said it was a shadow and it was the blood clots. They said it was pulmonary embolisms from the anaesthetic on the knee, from when I had my knee done. And I think that, that was one of my down falls, because I’d had the knee done I think they just automatically took it that, but when I went back to see the specialist and I actually said to him, “I’ve had CT scans, I’ve had VQ scans, can you tell me why all those never showed up the cancer?” and he said “It was because we weren’t looking for it.”And that’s all it was, because they weren’t looking for it so…

Yes I had a VQ scan; For that you have to go to the Nuclear Research Department, which I did. I wasn’t allowed to have anything to eat or drink for so many hours before, and then they come out and they just put a blood, like an injection into your arm. And then they take you in and then they fit you up onto a video camera and you can actually see the screen and you can see your lungs actually working and you can see the dye going through the, to all the arteries in your lungs, and you could actually see where the mass was;

So then, it was suggested that I go for a PET scan, OK we’ll got for a PET scan. PET scan is when you are injected with a radioactive fluid, and you’re put into a room, lovely music, you get a choice of music, and the lights are dimmed and you have to lie still for an hour while this radioactive fluid gets round your system. That was OK, it was fine, yeah. It did relax me a little bit, but with all that was going on, the concerns are getting deeper and greater. I want someone to tell me what the problem is and nobody can at this point. So then, I’ve had an hour on the bed, and then I go in for this PET scan and I was again given a choice of music, because the PET scan takes quite some time to do. Err, it’s quite peaceful just lying there on a bed, just going through this scanner. There is no fear of scanners, they don’t hurt you, they don’t remove anything from you, you just lie there and, just sensation of moving backwards and forwards, it’s rather pleasant I found.