Interview LC10

Age at interview: 48

Age at diagnosis: 48

Brief Outline: Diagnosed with non-small cell lung cancer 2002, left lobectomy (lobe of left lung removed), and thyroplasty implant (designed to treat disabilities associated with vocal cord paralysis) 2002.

Background: Merchandiser, divorced, 2 children.

His lung cancer was found after he consulted his GP about another matter.

So I spent January of this year, 2002, preparing to give up smoking. I went to the Cessation Nurse, I went to my GP, I got, started to do a written programme of my intention to give up smoking and was due to start on Zyban which is a much maligned drug which helps you give up smoking. Personally I found it marvellous. So my date to give up was 1st February, on 4th February I went to my GP to get my new prescription for cholesterol tablets and he spotted the clubbing of my finger nails and he said "I'd like you to have a chest x-ray." And I said to him "There's nothing wrong with my chest," and he said "Trust me I've been doing this for a while," and he said "I'd like you to have a chest x-ray, no rush any time between now and lunch time," that was his, exactly what he said.  

And I was in the chest clinic at half 11 in the morning, I think it was a Thursday morning, I got a phone call on the Monday saying would I come back for a more thorough x-ray done on a bigger plate I think. And all of the time I was thinking, 'Well of course there's bits of crusty old muck on my chest I've been smoking for 34 years.' The last thing I thought it was lung cancer, it never crossed my mind. And when it did I dismissed it as not being likely. So then I was referred for a CT scan and by now the professionals must be fairly confident I have lung cancer and I'm still blissfully unaware of this thinking they're all wrong.

Thinks his lung cancer was caused by smoking and another factor such as a poor diet.

Apart from cigarettes have you ever thought about other sort of causes of lung cancer, can you just talk about your thoughts around that?

Yes the surgeon did say to me that cigarette smoking certainly hadn't helped but he was pretty sure it was cigarette smoking and AN other and he was equally sure that he wouldn't be able to identify what that AN other was.

AN other?

Another, another area, another causal agent for the cancer. I suspect poor diet will have had some you know part to play. I'm not a great eater of fruit and vegetables and that is, they definitely minimise the likelihood of the development of lung cancer.  And I was, and I'm a terrible dairy products man but that's changing now.

Describes his bronchoscopy, via the throat, which was painless, and which he found fascinating.

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.

Says his circumstances have led others to reconsider their use of recreational drugs and working...

How has all this affected family and friends, relationships?

In a very positive way in general. The only down side is the fact that you become self absorbed and you become just fascinated in your own condition and prospects and have little time and interest in other people's concerns. And that doesn't help the interplay between family and yourself. But on balance people are kind and helpful and positive and quite shocked as well. It does impact, people do, I know I'm aware of a lot of friends and family re-evaluating their own relationship with recreational drugs and working conditions and urban conditions in light of my circumstance yes.

That's very interesting. Do you feel you can talk to neighbours about it and how do they react?

Yes with great ease and I can talk to neighbours about it and [they're] shocked just because I look so fit and well and they were all quite shocked yes.

He found the Internet invaluable for getting information and for contact with other people.

Since your operation have you looked for information about lung cancer on the Internet for example?

Yes, yes most definitely and much of the good information on it comes from the States and it's instantly accessible, it's brilliant. I was, there was an amusing incident when I went for the thyroplasty and the young doctor was explaining to me what the operation was and the diagram he showed me was so primitive compared to what I'd found on the Internet of colour, 3D representations of exactly what was going to happen. It's an absolutely invaluable tool. It's not everyone's cup of tea, not everybody wants to know the ins and outs; personally I'm far too nosy to let it pass, yes.

Would you recommend any particular websites to other people?

The Roy Castle web site is very informative and it has links which will send you off in different directions, and the Macmillan Nursing is an interesting website. But then the ones from the States, you just put in cancer on a search engine and get thousands and just fish through them, they're extraordinary. And there's advice, dietary advice, post op, and all these kind of things, there's lots of things, lots of information there yes.

Were you given any dietary advice post op?

I can't remember.

Did you did you search for information through books as well or mainly the Internet?

No I couldn't, you couldn't read immediately post op the effect of the anaesthetic you find words are moving off the page. I'm a bit of a lazy reader to be honest with you.

So the Internet was the best?

Yes, yes, yes and particularly nowadays it's so quick and easy to use yes. Yes it's been a great source of information and entertainment and all sorts. I mean when I had trouble speaking to be able to chat with people on the Internet was extraordinary, for friends and strangers yes.

Describes the scar from his pneumonectomy and shows it on film.

And then finally you said you wanted to say a little bit about your operation scar?

Yes, the first time I saw the scar, the day, on somebody else the day I was going for the surgery I was quite alarmed by how ugly it looked and when you come home it is indeed an ugly scar and the flesh above the scar sags down over the wound and it looks ugly and unsightly and then it does tidy up, it shrinks back and it settles down. It's still a big operation, it's still big, evidence of a big operation but it's much more tidy now, I'm quite happy to show it.

 [SHOWS SCAR] 

Yes, you can plainly see the scar there and two drain sites, and the swelling around the scar shrinks back and its now quite tidy and there is no discomfort there to me at all, and its less unsightly than it is immediately post op, when it is quite scary.

Describes reflexology and its beneficial effects.

Did you try any complementary therapies?

Yes, yes these, at the local hospital I'm able to have five sessions of reflexology, Reiki, aromatherapy, healing. I've had one session of reflexology, absolutely extraordinary, extraordinary, you, it just sounds like so much hocus pocus and it's extraordinary, the impact. I was like walking on air for two or three days afterwards and I had relief in my neck, relief, I could feel relief at my, I've forgotten the word for it, diaphragm.

Diaphragm?

Diaphragm. That was the other word I couldn't remember in hospital diaphragm. 

What do they do exactly?

It's just massaging your feet but the whole foot is treated as more than a symbol of your body but as a map of your body it's almost like a computer, numerically controlled operator, pushing buttons to impact on the various different organs of your body. It is extraordinary, extraordinary, and I'm booked in for my first healing session next, at the end of this month, quite what that is I'm not sure, I'm not sure.

Have you tired any of the other ones yet?

Not yet no, no.

That's all free under the National Health?

Yes it is yes, yes.

Explains why he had to have a thyroplasty operation after his lobectomy.

Yes but the nerve supply to the voice box from your brain goes via the lung, it doesn't go direct to your voice box and because the two work in harmony so the nerve supply, well they expect the nerve supply to go to your spinal cord into your brain, the motor nerve and the sensory nerve. But that's not the case, both of those systems come down to your left lung and back to your voice box and damage to that nerve supply is not uncommon in that particular procedure. So it left me with only half a voice box and great difficulty breathing. They used to in the old, I think previously they used to give you Teflon injection in the vocal chords which had to be topped up every so often. Nowadays they prefer to do thyroplasty which is to insert a prosthesis under local anaesthetic into the trachea and to close off that gap that's left and the dormant vocal chords will pick up some of the vibration from the other side as well so it's reasonably comfortable.

So as well as nerve damage you say there's also, there was a gap?

Well if you imagine the voice box is two harps together and a piece of cartilage in the middle, these cords here have no nerve supply so they're just dead and dormant and so they're just laying there and when you enunciate a vowel these chords spread like that and these are lay dormant so the air is just pushing past and you can't distinguish between breathing and swallowing and you can't cough because you can't close your lung. You can't close your lung to give you the pressure to cough and you lose your coughing reflex, swallowing reflex is difficult and you quite often inspire liquids, which is a bit alarming.

A Macmillan nurse helped him obtain the Disability Living Allowance (higher rate) and a small...

But the Macmillan organisation can open doors that you don't realise are there. And there is a history of people with cancer and their families eventually tackling the benefits agencies and it taking too long, so nowadays they will acknowledge your situation very quickly and put you on the higher rate of Disability Allowance, without having to wait the six month period, because if you've had a malignant tumour there's a high probability that you won't survive much beyond the six month period, so nowadays everybody get the full allowance of benefits. But it did take a long time and it did seem to be a bureaucratic process to get it, but I got the Welfare Rights Officer from the City Council came to see me and one or two pestering phone calls and some close family members who fought my corner. But it was a tussle, it was a tussle to get all the benefits acknowledged, but I believe it is easier now than it was in the past. But it's something you have to, something you have to chase for. But there are agencies there that will tell you what you're entitled to and you're entitled to 'Motability' allowance as well.

And did you say the Macmillan's also have small grants that can also help you?

Yes they will, they will give you a one off grant to help you to catch up or to help you in your quality of life. For example one of the consequences of cancer can be enormous weight changes and your wardrobe is inappropriate so they will help you to restock your wardrobe. Yes, I got a grant of about '600 from them as a one off very early on and it was very helpful.