Interview LC42

Age at interview: 67

Age at diagnosis: 66

Brief Outline:

Diagnosed with lung cancer in 2002, treated with radiotherapy from outside the chest to the lung in 2002, and then cryosurgery between May 2002 and May 2003 (died July 2003).

Background:

Buyer (retired), married, 3 children.

His children were 'absolutely shattered' when they first heard about the diagnosis.

Obviously it must've been very difficult telling the children, what would you recommend to other people who are thinking about what to tell the children or how to tell the children?

I think that there isn't any easy way; I've always met things head on. I mean the children all knew that I was going through this particular consultation and what the outcome was likely to be and I just told them I'd got lung cancer and that it's inoperable, but I'm not dead yet. And that's the way I've treated most things and even their own problems we've always tried to deal with it in that particular way.  

They were absolutely shattered and a lot of tears, but they did actually get over it and they were aware of it. And I think the very act of having treatment has made it easier for them, that something is actually happening, and they'll perhaps see it rather differently if and when I get to the end of these particular treatments and there is nothing left. But time will tell. I mean unfortunately I thought when I was first diagnosed I'd got a year, I'd got six months, I've got now fifteen months, I might last another six, I might last another year, it's all a bonus. And so yeah, just carry on one day at a time.

Describes what it is like in the ward before cryosurgery.

Yes it is a typical hospital operation. You're asked to go in and report in by 8.30 in the morning. It is some distance from here so I have to get someone to take me over which means I probably get up about half past 5 in the morning to be taken over there and I get there perhaps about half past 7. But I'm relying on somebody else who's got to go work so that's part of it.  You wait at the hospital until the ward clerk registers you in and you are then sent up and allocated to a ward. Again you're probably up there by 9 o clock. The disadvantage that I found, and it may be that with a number of visits I've become more sensitive to it, is that you go up there as a day case and the expectation is that you will go in, you'll have the procedure and you'll be away by about 4 or 5 o clock. When you get up on the ward the majority of other patients have had open heart surgery and some are still quite ill, some have only just come up, they've got drips and they've got drains and it's a great pressure on the nursing staff. It's not so much that you're ignored but I couldn't help feeling that you do in fact become in the way, to a degree. That's not suggesting that the nursing staff don't care but...

The procedure prior to cryosurgery is obviously blood pressure, they stick a thing on your finger which I think denotes the oxygen levels in your blood. You're visited by an anaesthetist who'll have a chat with you and ask you if you have any allergies and he's going to put you to sleep and he'll see you later. The doctor then comes round and you go through a whole list of questions, do you feel well, have you got any heart problems, do you have blood pressure problems, did you smoke and it goes on like that. The other down side of that is of course you can't eat anything from midnight the day before and the last fluids you're allowed are probably about 5 o clock in the morning. The next hitch then I'm afraid is to sit about for quite a long time. All this has taken place and it's all over probably by 10 o clock.  I normally ask what number I am on the list to go down and although they tell you that particular number you may be four, you may be five, most of the larger operations are carried out before you go in and obviously if they run over or are delayed then you can be there quite some time. But I'd normally have gone down by about 2 o clock in the afternoon, they send a porter for you and they take you off one bed, pop you on the other one, having already dressed you in your party gown which I find impossible because I can never tie the strings up at the back.
 

Although cryosurgery cannot cure him it had helped him to feel less wheezy.

How did the consultant explain to you how the cryosurgery actually works?

Yes indeed they use a tip which is in fact colder than liquid nitrogen and actually freezes the tumour which in fact will kill some of the cancerous cells. And in my case at the last, the fourth session I had they did explain that in fact it had been reduced by some fifty percent in size (laughs), of course being greedy I suggested if they kept going could they get rid of it?  But that wasn't something they would be drawn on and quite rightly so.

So the therapy really opens up some of the airways to make breathing easier?

It does, that's the whole purpose.

It has improved my health, I'm not as wheezy and I can do a bit more than I was doing before that. The difficulty is that with cryosurgery it seems to last for three or four months and then the condition starts to come back again and become a bit more wheezy. That, I think we discussed it with the consultant, could be outside influences, it could be pollen, it could be elements that I'm particularly allergic to. The consultant did tell me that after the fourth session of cryosurgery that he had actually shrunk the tumour by some fifty percent which was very good news and at the moment it's just ongoing. And I have just recently had my fifth sessions of cryosurgery and am waiting to go back to out-patients.

Describes his post-operative recovery after cryosurgery.

And then next thing you know you're back in recovery. I invariably finish up with a bit of a tight cough and absolutely parched and they offer you some water but obviously sipping is a good idea, not try and drink it, which I do. They keep you in there until you look as though you've recovered, somebody will come and talk to you and ask you what you did, what your name is, how many children have you got, to see if your brain is working presumably. I would appear to be affected by anaesthetic in so much that my blood pressure drops quite low and I understand it can be a normal occurrence with an anaesthetic, but it's usually back up again within about quarter of an hour. They then ring for the ward, who sends a nurse to come and collect you plus a porter.  

And you're wheeled off again and you finish back in the ward where you were and you get on your bed and you sit there. They invariably offer you a drink which is very welcome and so you probably spend half an hour sipping water or tea or whatever you can get hold of. The first time I went they actually were very kind and offered me something to eat and that wasn't a good idea.  I tried eating a sandwich and I nearly choked on it so I've never accepted any offers other than that, it's a good idea not to actually eat anything.  The next thing probably within the next hour is the doctors will come round and they'll say the procedure went well, if and when you feel well enough and you can pass water you can go. I always hop up very rapidly at that point and get dressed and go and pass water if I can and say to the nurse "I'm off, I'm going." I then pop down and ring up for my lift to come and get me.
 

Describes the post-operative side effects of cryosurgery.

The disadvantage; there's no real recuperation period required after that [cryosurgery] but from a personal point I did finish up with a very sore throat and that lasted for at least a couple of days. And you are told to expect to cough up blood and little bits of tissue and a lot of phlegm, again for two or three days. It never resulted in me having to go to bed, the following day I managed to get up and take the dog for a walk even though I'd got a sore throat. And that was largely repeated for the next two, it was the fourth session when I assume they used different doctors and different consultants, it's not the same person every time, whoever had me that particular time I actually lost my voice for about two days, plus the sore throat. And it was very difficult to eat, drinking was fine but eating was almost impossible. But that is the only time and again I've had a fifth one within the last few days and again apart from a sore throat for a couple of days that was fine.
 

He was reassured that there are health professionals who specialise in pain management.

So did you start looking for more information about lung cancer after you had the diagnosis?

Yes I did. I read a couple of books and read a load of leaflets and it was really at that stage that I sort of made up my mind well, I've got two options I can sit down, do as little as possible, be waited on and wait for the cancer to take me out, or, I can pretend I haven't got it, knowing full well that I have, and try to live my life as normally as possible and do what I've always done, and that's a decision that I took. It was one of the reasons why no one was told other than my immediate family, the children. And they were desperately upset when they found out. They've come to terms with it, it's a bit of a catch 22 because the more I carry on as normal perhaps the less serious it makes it appear to them and perhaps when the end comes it might be more of a shock than it might have been. The difficulty with cancer is knowing how it's going to take you out at the end. I mean obviously your condition is going to deteriorate, I assume you'll get more and more breathless, that you'll be bedridden, perhaps that's a slower introduction into the final end for the family. But I believe there are other occasions when perhaps it could create a heart attack and I'd just be gone, which would be better for me.

Mmm, have you ever asked people about that sort of thing?

I, in addition to all my hospital appointments and out-patient appointments I see my GP on a three monthly basis to see how I'm going on. And we had this particular discussion because I said "What's going to happen when the hospitals can no longer give me any more treatment that's going to benefit me, will I be sent back to you to be finished off?" That was my particular terminology to him and it actually made him laugh which was quite good and he said, 'Yes.' And I said, "Well the only concern I've got with that is I've heard the most horrendous stories of people being in hospital in the late stages of cancer, morphine has run out and there's no doctor to sign any more morphine, to sign a prescription form and people are laying there actually screaming and wriggling in agony." He did admit that he'd heard those particular stories himself but there is now specialists who are specialists in pain management and certainly they would be involved at the end. It again begs the question how long have you got? I think from radiotherapy they reckon one to five years. We're all individuals you can't tell.

So what I do is I live every day, not as if it's my last day but just every day as I would normally live it.