Interview LC38

Age at interview: 62

Age at diagnosis: 61

Brief Outline: Diagnosed with mesothelioma in August 2002, followed by chemotherapy between October 2002 and April 2003.

Background: Managing director of a company, married, 3 children.

His first symptom of mesothelioma was shortness of breath.

It all started really, January last year, that's 2002, and I'd begun to realise that I was becoming short of breath, and if I would walk, well I suppose initially, if I ran for the train, I always seemed to be running everywhere, it's sort of an old habit. And I found that I was short of breath and the breath was becoming more and more difficult, until January, February time, when I realised that just walking, from one end of the office to the other, I could tell that my breath was less easy, and up till this point I'd just put it down to the ageing process. And I'd just thought, 'Well I don't need to do anything about it'. I've never made a fuss about anything and it was just so easy just to write it off and assume it was natural.

When it got to noticing the difference just with a short walk, I thought, 'Well this can't be natural. This can't just be the fact that I'm in my early sixties, this can't be right. So that's when I first went to the doctor. The doctor was absolutely amazed and said she, my local GP, she listened, put the stethoscope on me, and sort of listened to the lungs, and she obviously didn't like what she heard. And she said, 'There's something going on there and I think we need to investigate this pretty quickly', she said. 'You should really shouldn't have left it this long', and I said, 'Well you don't see me very often'. I actually know her quite well, but, because of helping her out with computers rather than because I'm her patient. 

She referred me straightaway to the local hospital. I went to the local hospital, was introduced to a specialist there, in the Chest Clinic, and he straightaway said, 'Chest X-ray', took me through to the Chest X-ray department. Now that was, by this time it was sort of end of February, last year, 2002. The X-rays came back the same day, and his immediate reaction was, 'You shouldn't be walking around like this', because he realised that, well the X-ray showed, that the largest part of the left, the left part, left lung, was, shrouded in fluid, and I was actually running on one lung. And that's why I was short of breath, all quite logical really.

Describes his first day of chemotherapy.

So I started chemotherapy in, third week of October 2002. Knowing all the side effects that could crop up, and I have to say that the whole trial, the whole chemotherapy experience, it's been handled as well as it could be. I think it's horrible to start, but initially, I mean the first chemotherapy session, I went home thinking, 'What's all the fuss about?' because I'd been there at the hospital' 

You go in as a day patient, see the doctor, the doctor has a chat to make sure you're feeling fine that day. You have blood taken for blood tests to make sure that the levels of blood, red corpuscles, white corpuscles and platelets are all sufficiently high to take the chemo for that day. Those two things in place, the doctor then decides on the levels of chemotherapy. The formula is sent away to be mixed up for the individual patient. It comes back an hour or so later. I was put on the drip, and it takes, it took about three, three and a half hours that I was attached to the drip, receiving various chemicals out of a bag in the sort of top. 

But I had the chemotherapy for that day, met lots of people. Some were on their first treatment, some were on their fifth or their eighth. One person I met was sort of nearing the end of his treatment, and there's a lot of camaraderie, obviously, because although we're not all there with mesothelioma, there are others with' Some of the women are there with breast cancer, or with stomach cancer, there are so many different types of cancers and until you get into that environment you don't talk to people about cancers, it's not an everyday subject. 

Describes his pleural effusion and how fluid and part of his lung lining was removed for analysis.

Now that was, by this time it was sort of end of February, last year, 2002. The X-rays came back the same day, and his immediate reaction was, 'You shouldn't be walking around like this', because he realised that, well the X-ray showed,  that the largest part of the left, the left part, left lung, was shrouded in fluid, and I was actually running on one lung. And that was why I was short of breath, all quite logical really.

Obviously the next thing was to find out why the fluid was there. I was.. he did, at the local hospital they did tests, and culminating in a biopsy test where he, injected to remove some of the fluid, which he sent away for, analysis, and at the same time used  a slightly bigger type of needle that has a sort of claw, where there could take a little bit of the lung lining. This was all done just on local anaesthetic. And they removed a little bit of the lung lining also for biopsy. These were sent away and in fact came back without any answers having been found, and he told me at that time that they were interested in looking at, TB, pleurisy and a few others that I don't remember, but, but, various investigations.

Discusses his feelings about losing his hair during chemotherapy.

Had your hair fallen out by this stage?

It started after about five treatments. Suddenly, I was seeing a lot of hair on my coat collar. I didn't realise I was losing it (laughs), but it was' The whole structure of the hair changed, so it was more prone to breaking. So I was seeing short hair on the back of the collar, and I could clean it off in the morning and go home in the evening, and it would be back. So it was fairly dramatic once it started. I suppose hair loss is one of the best-known side effects of chemotherapy, because most people associate that. What I didn't realise, because I also knew hair loss could happen - and in fact it did, it had started - Pardon me. But what I didn't realise is that you also lose the hair from inside the nose, and the ears, and on your arms and your legs. I'd just assumed it was on top of your head! (Laughs). And I couldn't really afford to lose a lot, I was already fairly thin on top, but '.

And how did it make you feel, losing hair?

I didn't particularly like it. I'm a bit vain, so I would have preferred to have kept what I thought were my good looks, but I didn't like the look of me as I began to go bald.  But it doesn't seem to bother anybody else, so I discussed it with my wife, and she said she'd still love me even if I had no hair!  I remember saying to her, 'What if I have no hair on my body either?' and she said, 'Oh that's okay, I'll still love you'. And I said, 'Well, what if I've got no money?' She said, 'Well that's different!' (Laughs) She 's a bit of a shopaholic, is my wife.

(Laughs)

So once I knew it didn't bother other people, then I didn't bother about it. It hasn't worried me, losing hair.

He couldn't fault the attitude or attendance of the nurses and that he liked having a 'particular' nurse.

The nursing care was excellent - very attentive nurses, and each one of us had, was assigned a particular one. And certainly they were, they were very good - I couldn't fault the attitude or the attendance of the nurses. But um.. 

Do you think it worked, having a particular nurse assigned to you?

Yes, I think you just get' there's a feel good factor about feeling that someone's responsible for you rather than,  half a dozen nurses any of which could be responsible. So I did like that, yes. It didn't mean that if,  if I couldn't see her I, I couldn't ask someone else to get me something. 

 

Comments that after his operation the nurses did not have enough time to give him all the attention he needed.

Again, what was the nursing care like during that time?

I think I'd have liked a little more attention. I don't think' I think it was after the operation I realised that they have a lot to do, and not enough time to do all, and really not enough time to look after patients. So for a lot of the time you're on your own, reading, or listening to the radio or whatever. But you are left alone, and it becomes scary, because you don't'. I suppose everyone' you can't get used to that sort of thing, I can't imagine you'd get used to it. So, it's scary because it's serious stuff, and it's ' to, to the nursing community it's everyday, but to the patient it's not. And it certainly wasn't to me, this was all, obviously the family came to visit me, I did have lots of visitors and I felt very' because I was' how far from home' about fifteen miles from home, and yet' My wife came in every day and some, sometimes twice a day, and I kept sort of wanting to make it easier on her and say, 'No don't come and see me so often', but really I wanted to see her, so'

Would you have liked the nurses to have had more time to sit down and talk? 

Yeah, yeah. I'm sure, I certainly would. I felt that I didn't want to bother them because that's my attitude, my attitude to life anyway, so I didn't want to make their job any more difficult, but at times I had to ask for things, but I wouldn't ask until it had already got (laughs) it had already got to me a bit. So, you know, yeah, I would have liked more TLC [tender, loving care].

I think my first conclusion about the National Health Service, that not enough money goes in at the sharp end, I think most people would agree with me there. I think it's the nurses that need the support. I think there is far too much red tape, far too many managers. Get rid of half the managers and increase the number of nurses and you would solve the problems of the National Health in one go. I think that the nurses that are at the sharp end do an incredible job, and they care about what they do, they really do.
 

Explains why he thinks his daughter found it hard to talk about his illness.

My youngest daughter, when I first told her, found it extremely hard, and in fact she didn't phone me for' probably about two months. And normally we used to' she's actually, she was living in Hemel Hempstead at the time, so we'd meet up, but it's some distance away from Essex where I live. So, but we'd speak on the phone weekly, every other week. Two months I didn't hear from her. I phoned her up, and I said, '[her name] You haven't phoned me. You know I don't mind but what's the matter?' She said, 'Dad, I can't talk about it.' And I suddenly realised that she actually had a big difficulty in just accepting and being able to talk about cancer. 'Dad had cancer'. She didn't want to accept it, and one way of dealing with it was not to talk to me. Not that she didn't want to talk to me, but it's a way of trying to conceal the truth. It's' but I said to her, 'I understand, that's fine. If you don't want to talk about it, we won't talk about it. It's okay. It's okay to be frightened by the word. It's okay to feel that you're dirtied, that you're made dirty by being close to someone who's got something that you regard as a nasty thing'. And some people, that's the horror. I mean, some people just can't say cancer. They talk about the 'Big C' or they talk about' but it's something they want to distance themselves from.

But why do you think people feel that cancer might be dirty?

Because, maybe because we don't understand it, because there's no way of understanding cancer. It's something that grows within certain people and there's something disgusting about it (Laughs). There's something' because it's not nice, I suppose, you know, it's just something that's, it's, it's cells that are some sort of misformation. I think there's an association, not dirtiness in terms of 'I need to hoover it up' or 'I need to get the dishcloth out' but just dirty in the sense that 'I need to keep away from it, I want to remove myself from it'. So, I think that's what she felt. I haven't discussed this with her, because until such time'.. 

Unfortunately she's now moved even further away. She's now living up in, near Glasgow, and I haven't seen her since she moved. And really, I need to see her and then be able to talk to her, because it's not something we can talk over the phone.

He obtained benefits and compensation through a support group that helps those with mesothelioma.

I believe you can get some sort of financial compensation from the Government for asbestos. Have you been advised about that?

I didn't know anything about that whatsoever, and the first time I went for chemotherapy I was talking to one of the guys there, and he said, 'Have you had all the leaflets from the Macmillan nurses?' So I said 'no'. The Macmillan nurses and mesothelioma hadn't really connected in my brain, and he said, 'Oh well, here's the address, give them a ring, they'll send you the leaflets'. And he said, 'Have you thought about, sort of, applying for some sort of financial help?' I said 'No, why?' He said, 'Well, here's an address, write to them', and, it's the support group up in the north. He was using actually one in Liverpool. I contacted them and they've been brilliant, and right from the start they said to me, 'Well you need to apply for an industrial injury', and they asked me lots of questions, and eventually we came to the conclusion that this one particular factory where I had worked for a while is a potential likely cause. And their insurers will sort of pay compensation, so the various things have been put in place, so' yeah. I have applied, and it's just sort of followed its natural course. 

When you said the support group up in the north, is that the Roy Castle Lung Cancer Foundation, or is this a support group specifically for mesothelioma?

Mesothelioma; it's an asbestos-related' most of the cases, or, or the majority of cases are likely to come from the northern counties, because there were asbestos factories up there, whereas we didn't have many in the south. So, there is a support group, and once you're in touch with them, they virtually handle everything, and they steer people in my position through the various things that they think we should do, and I've just followed their guidance really.

Advises others to stay strong and have a positive attitude.

I suppose, I suppose my only message would be, stay strong. Never' I think it can be fought. I know, this isn't the end of my story, it's just another stage in it. My conclusion would be that, cancer can be fought and I think you have to stay strong and stay positive. I think' I didn't realise that a positive attitude makes such a big difference. I knew I would never agree to anything other than a positive attitude, but I didn't know, I didn't know at the beginning that I would get to the end of my treatment and feel that actually, it has made a difference. But I think it has.