Interview 55

Age at interview: 56

Age at diagnosis: 42

Brief Outline: Diagnosed with non-small cell lung cancer in 1989, followed by lobectomy (removal of lobe of left lung).

Background: Joiner (retired), married, 3 children.

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He had first suffered from a heavy cold over the Christmas period. In 1989, the day after New Year’s Day he had an episode of coughing up bloody mucus. He wasn’t sure what to do or what it was because it was a thicker consistency than blood. He went to see the pharmacist for advice and then decided to go to the hospital. They conducted a series of tests but had been unable to find anything. He was asked to come back at a later date for further tests. He then began a series of tests, which he found to be a nightmare process of elimination.

 

He then underwent a bronchoscopy. He explained that he knew during the procedure that it was something far more serious than he’d expected from his doctor’s reactions. He explained that he did not receive a diagnosis until later on. He felt hopeful when his doctor reassured him that there was nothing to worry about. He had felt more concerned about his family, their future and how this would affect them. He underwent further tests and an explorative operation. He had felt scared as his tumour had been close to bridging across to his other lung and was relieved to find out that he was eligible to have the operation. He was referred to another hospital for the operation, where he formally diagnosed with lung cancer. He had found the way in which the diagnosis was eventually delivered was cold and bitter but that the severity of his condition finally sank in. He explained that for him, at the time, cancer had meant death. He wanted to be at home with his family so had signed himself out of hospital whilst they conducted their tests. He eventually had the operation. After his lobectomy he felt awful. He described how he was in a lot of pain, had breathing difficulties and experienced numbness around the scar. He explained that he needed to take a break to put it all together and that his recovery from his surgery took some time. It was not an easy 12 months following surgery but he feels fortunate that he survived and is still here. He found that a change in diet, breathing exercises, relaxation and yoga helped him manage breathing difficulties. He was happy and relieved to find out that he did not require any further treatment after surgery. Although he and his wife had felt uncertain about what the future held, they just wanted to get on with their lives. They felt that a huge weight had been lifted off their shoulders. He felt like a new person.

 

His diagnosis had been a shock for his family and one they had found difficult to understand. He found his wife an invaluable support. He also found inspiration from another patient on the ward, who had also had lung cancer some time ago and survived. He felt reassured as he had been able to talk to someone who had been through it. He explained that initially he had found the diagnosis difficult to cope with as he was the sole provider for his family and had always led a healthy and active lifestyle. He found that it was difficult to obtain answers to his questions and would have appreciated more information from his doctors. He felt that his doctors kept speaking in jargon and withholding information. He explained that he feels ashamed of having cancer and that he didn’t openly tell people about his condition. He felt that, especially with lung cancer, there was a stigma attached to his condition and that it affected the way people viewed him. He didn’t want to feel like a victim. In particular, he felt that he had been treated differently by health professionals and found that they had wrongly classified him as a smoker in his medical records. He felt that the experience had been difficult enough without doctors saying “this is what caused your illness”. He had felt frustrated as he had never smoked and found it infuriating that they would not remove this from his medical records. He started a campaign and wrote letters to the local media. 

 

Since his experience of cancer he has done a lot of fundraising for cancer related charities and joined a rambling club. He explains that it’s a slow process recovering after surgery but that he does what he can manage and is aware of his limits after surgery. He explained that he started with short walks and eventually tackled mountains. He has also been involved in support groups, where he finds it comforting to speak to others who have had similar experiences to him. He feels that it is important to never give up hope. He also believes that you shouldn’t do it alone and that it’s important to have a support network, not just for you but for friends and family too. 

 

 

 

After having lung cancer he organised fundraising events for the Roy Castle Foundation and took part in a marathon himself; he was given an award for his achievements.

Yeah, later on as I started to recover I heard, when Roy Castle, - is it OK saying that? Yeah – when Roy Castle was first diagnosed with lung cancer it was in the papers, the news broke on a Saturday morning. And I wrote a letter that day and the following week I think, the Thursday/Friday I received a letter back from him.

 

Now he was the first one to speak out because he was diagnosed, and he was told it was through passive smoking - the clubs. And I carried on corresponding with him right up until he died, and I wasn’t, he’d raised a million pound over the next year and so, and then he threw his lot in with the, to form, formed the Roy Castle Foundation.

 

And I decided that I would raise some money, so I organised a sponsored walk up Snowdon, which was quite a challenge. And he came to Liverpool for the launch of The Roy Castle ‘Cancer’ Appeal and I met him at St George’s Hall, and I met him several times after that and I told him I’d stick with it until the Roy Castle Foundation was built, which I’ve seen done and more.

 

And that particular day we did the Snowdon walk two hundred and fifty people came along and it raised £25,000 on the day and there were loads of cancer patients on it, you know, and I made some lovely friends. And we’ve done several more walks after that up Snowdon, we’ve done walks through the Mersey Tunnel. I’ve done numerous charity nights with the, all hard work but well worth doing. We’ve done sponsored walks through, from Southport to Liverpool, twenty miles.

 

I actually walked along the marathon, which was amazing, I was dehydrated at the end of it and I was standing in Euston Station to get a hamburger and try to get some change to phone my wife - I was on my, down there on my own - and then I just felt my head swimming and I collapsed onto the floor, and I’ll swear to God people just stepped over me and got their hamburgers. And I lay there till, I had this London Marathon t-shirt on and some of the people who’d done the marathon recognised it, came over and got me a paramedic and I eventually got home, you know. That night I swore to God I was finished with it forever. 

 

And the next day I was out on a, chaperoning someone, a lung cancer’s wife, he’d died, her husband had died, to, Freedom of the City was given to Roy Castle posthumously, I took her to this show. And then I carried on from there, involved in everything.

 

You’ve obviously done a lot of wonderful work.

 

Yeah, but I mean I’d say it’s not, I’m just a do-er, it’s not everyone’s cup of tea to do that, you know, and I think basically its sort of, draw strength from your family. That’s…

 

You’ve met Prince Charles as well.

 

Yeah, I was nominated along the way for a few different things, and in October of this year I was nominated through the national newspaper for an award and I was invited to Highgrove. And I went down there to see him, and he was smashing, he was fine, he was perfect. There was other people as well, all different types of awards for different things, not only illness, and we had a tour round the gardens and that, you know, and I invited him to come up to the Roy Castle Foundation, which he said he would do. So we’re just waiting for that to happen!

 

He felt euphoric when he was discharged from hospital follow-up thirteen years after having lung cancer.

Yeah, and the final review that I had, that happened to me and then he discharged me, the doctor and I couldn’t believe it, it was quite emotional really. Because I’d said to this guy, ‘I reckon I’ve probably been coming here longer than you’ve been in this game’, which I had. And then when I went out I was so euphoric, if there’s such a word. The nurse asked me when I was going to come along again. I said, ‘Never’, and give her a big kiss on the cheek.

 

And I immediately went down, right back to the waiting room to tell the people there, and I went there and it was all men, and I just held me hands up and I shouted, ‘Lads’ - and they’re all sitting there with their faces down there because they’re about to go through the same thing that I had done - ‘I’ve just been discharged after thirteen years with lung cancer’, and they just all started clapping and cheering. And I know right away they gained some inspiration, you know, which is so important.

 

And then when I went back out into the reception area I asked would she frank my appointment card with a discharge stamp, you know, which she did, and then as I was about to go out the door, I held the door open to let someone in, and I heard a voice shout. And it was a mate of mine who was diagnosed with lung cancer a few months previous, and he shouted at me, being brought in for some treatment, and I went in and sat with him for an hour. The beast that was lung cancer refusing to let me go! But, you know.

 

Pain and breathlessness stop him sleeping on his right side after having a cancer removed from his lung; he finds that using a nebuliser, doing breathing exercises and going rambling all help.

And I got a lot of pain there for a long time, couldn’t sleep on that side.

 

Does that still bother you now?

 

It still bothers me, yeah, because I find if I’m lying on my right side, there’s one side where it affects my breathing, it’s like I’m cutting the oxygen off, so you know.

 

Do you have to take any medication for that?

 

No, no, painkillers maybe but I don’t take nothing really. I do occasionally have to go and get an inhaler because I find, I’m OK, my breathing’s fine, perfect really but sometimes if I do something sudden it leaves me gasping and a bit panicky at times, you know.

 

Have you got any recommendations for people to help with their breathing?

 

Yeah, again funny, when I was diagnosed and after I came out of hospital I’d done everything I could, I thought, to try and help myself. I did watch my diet somewhat and I joined a yoga club, like, two months afterwards. Anyway, I started doing light exercises and plenty of breathing and relaxing; I was trying to get my head together. I also had gone out walking all the time, walked around the park first a little bit and then a bit further like that, and then eventually I joined a rambling club, which I was able to do, I struggled with that but I kept that up and I’ve still done that now, and I’ve climbed mountain after mountain since.

 

That’s good. Are there any particular breathing exercises you do?

 

I do the alternate muscle breathing, I used to do that all the time, and then laying in what’s called the ‘corpse position’.

 

The what position?

 

Corpse position, where you lay on the floor and do breathing from the diaphragm. Breathing exercises, you can get them in books from the library, there’s even pamphlets, Roy Castle gave out leaflets on that, on breathing exercises.

 

For other people, could you just say a little bit more about breathing exercises and what they are please, what they entail?

 

Well breathing exercise, basically I believe it’s in your mind, you know, they can help you relax, your concentration, it’ll slow you down. And I just try to put as much air back into my body. And by doing, even doing the walking, breathing while you’re walking as well. Even when you’re sitting, eating, whatever you’re doing you can still breathe, breath is life.

 

Can you demonstrate one breathing exercise sitting there or not?

 

Yeah I can, a breathing exercise is basically if you get yourself in a correct position, not so much a sloping, you need a hard chair, a higher chair, hands by your side. Just close your eyes gently and just through your nose nice and gentle, that’s when your stomach fills up, not just your chest; and then when you’ve reached that just let it back out through your nose again. You can see your stomach swelling and then back out again, and I think you’ll find your whole body starts to relax and you start to think a bit more clearly. And it really helps you to cope with…

 

And you’ve found that helpful?

 

Yes, certainly.

 

So you try to feel good?

 

Yeah, all the positions, I even manage to stand on my head but I’ve stopped that because of the pains in my neck. But I still do that and practice with my wife, and just some gentle stretching exercises combined with the breathing exercises and

Because of his prior beliefs he feels ashamed at having had lung cancer; he thinks he should have been tougher.

Actually the thing that I felt was shame. I mean people would say guilt but I think there’s a fine line between guilt and shame.

 

You felt shame?

 

Shame, for me I was ashamed that I had cancer, that I presumed I had cancer, yeah. Anyway…

 

But why did you feel it was something shameful?

 

Because I was a man, because I, as a young man I’d boxed, I’d run marathons, I’d played rugby, at the time I was taken ill I was in an advanced swimming club and I just felt, I was at that time in work, you know, I was the provider and I just felt ashamed that this disease had come to me. I found that very hard to cope with; even now after all this time. Anyway…

 

Sorry, at the time you were taken ill you were, did you say a provider, did you say?

 

Yeah I was the provider, I was the one working, you know, providing for my kids and wife, you know. And I suppose it was that really, but yeah, shame, yeah.

 

I was just ashamed of having cancer, I really was, you know. Still am!

 

You still are?

 

Yeah, yeah, yeah. I suppose I just, you know, really wish it would go away forever, although I’ve been discharged and that, you know. It’s a stigma, isn’t it, you know.

 

You still think there’s stigma even today?

 

Oh yeah, yeah, yeah. I don’t think you, from the moment you have cancer you’re a cancer survivor, and that stays with you right till, the rest of your life really. You know, I’m not a victim because I’m here.

 

What’s made you feel that?

 

As I say, I think it’s because I feel I should have been tougher than that, you know. I shouldn’t have got cancer, you know. Like I said, it might have been something I’d done, maybe my lifestyle, you know, something I’d done wrong, I don’t know, or something I’d tried to do right, because I kept myself fit.

 

And you’re not a smoker.

 

No and I never smoked, no. On the contrary really, so I don’t know, you know.

 

Has anybody ever made you feel that by saying anything?

 

No. my own interpretation of people with cancer, long before I had it, if somebody said they had cancer I would look at them with sympathy and, you know, ‘Oh you poor soul’, you know, maybe that made me, suddenly I was in that position, they were looking at me. I was always aware of that when it first got about that I had cancer, I called it the ‘leper syndrome’ in as much that people are looking at you, they’re aware, you do see them and they are talking about you, that you’ve got cancer and everything, you know, even though they don’t know your diagnosis and your prognosis, you know.

 

So you think that’s still the same today?

 

Yeah it definitely is the same today. I’m aware of myself doing it in some ways when I know someone has cancer, it’s very difficult, how do you cope with somebody else’s illness, you know, when it’s maybe a terminal illness especially.