Interview LC09

Age at interview: 55

Age at diagnosis: 50

Brief Outline: Diagnosed with small cell lung cancer 1997. Chemotherapy, followed by radiotherapy to the head to prevent spread to the brain.

Background: Accounts assistant (retired), married, 4 children.

Says that other factors such as environmental pollution, chemicals in food may be to blame as...

Well it were upsetting. I've been in hospital quite a few times for different things, nothing as serious as that, and I have never been addressed in a way that I felt uncomfortable about something I'd done and he [the doctor] made me feel that I'd brought it all on myself. Since then being involved with, can I say Roy Castle Lung Foundation, and also my own support group and the Macmillan campaigners that basically lung cancer patients find themselves in the position where they feel that they've caused it all themselves. And where you know some cancers, people are very sympathetic towards, like ladies having breast cancer and it's very highly backed by the normal public you know, when it comes to charities and donations and what have you, lung cancer is like the bridesmaid, never a bride, you know it's like the poor relations of cancers. They don't get funding like other cancers get and probably that's because we feel that it's our fault. But at the end of the day it's not our fault it's the tobacco manufacturers' fault for putting the carcinogen in, sorry carcinogens in, in the first place.  

We [in our support group] all agree that there's other things other than smoking that can cause lung cancer you know like environment, like where I live there's a motorway over the road. Just over the bridge there used to be a chemical factory, all my life you know when I were a child growing up round here, and it were pumping thick yellow smoke out 24 hours a day. And unfortunately in this area there is quite a lot of people do get lung cancer you know, it's quite common. But you don't find that out until you've actually got it yourself, because nobody wants to talk about it so you know.

So you think the environment is also [to blame]?

Oh certainly yeah and along with everything you put in your mouth like stuff they they're putting on food to give it a longer shelf life, things that they're doing to make them all the same size and the same shape, all the chemicals that you get from that you know from that source. So yeah I think there's a lot of other things, why it's more rampant now than it's ever been before you know.

Recalls she was worried she would not be able to care for her grand-daughter and that she wanted...

I were absolutely panic-stricken. I were 50 years old, I didn't feel like I were 50 and I'd got such a lot going on in my life at that time and I was so worried that I were going to die and not actually be able to you know finish what I'd started with my grand-daughter for a start, you know fostering her. That were the biggest worry and I think, I remember actually my husband says, "Would you like a drink?" and I says "Yeah I will have a drink," I says "I'll have a stiff Bacardi and coke please." And while he were up doing it, and I could hear him crying in the kitchen actually, I went and phoned my mother. And I knew she'd got a little bit of money in the bank and you know she'd always said there's only me and my brother so it were there if we wanted it and certainly there for split down the middle you know when anything happened. And my Dad had died about a year before and I remember going to the phone and asking her if I could have what she were going to leave me now because I might not be there in a couple of years to spend it.

And I said, "I want to go on holiday, I want to go to Kenya on safari," you know. And then I thought, I come off and I thought you fool (laughs), you know but she said it were okay and I could have it. But I just could, that were all I were bothered about at the time, were looking after my grand-daughter and going to Kenya before I died you know. And here I am five and a half years after it and I still haven't been to Kenya (laughs) - I've been to Mexico but I've not been to Kenya you know. 

Emphasises that members of the family also need support and reassurance.

But members of the family need just as much reassurance and they need just as much support, probably as what the patient does, you know. And in my case probably some members of the family even more than I needed it, you know, because they were just so terrified.

Did they have any access to any sort of support apart from you supporting them?

I think they could've had if they'd have wanted but my husband is not, and probably most men are in the same boat, they wouldn't go for that support anyway, they don't want to talk about it to anybody else. So I think it were a case of family members supporting each other more than any outside help you know. But we always knew it were there if we wanted it. Like you know the Macmillan organisation were brilliant, I love plugging them (laughs).

She decided to tell her children the diagnosis because they were educated and would suspect she...

How did you tell the rest of the family, the children?

Well I didn't want to tell them at all, but unfortunately in this day and age if you mention chemotherapy or the treatment it makes you iller than what you are to begin with, well people are well educated enough to know what's wrong. So I've got two sons and two daughters and I told my eldest daughter first and then I went on to tell the other three and obviously they all got upset. I've had different reactions from them, I mean now I think they've forgotten that I've ever had it, you know, but at the time, when I wanted to talk about it my daughters were very helpful and they'd listen without getting upset and weepy. But one of, my oldest son he just, he burst out in tears at the least mention of it, you know really didn't want to talk about it at all. But like I say, now I think he's forgotten that I've ever had it you know.

Remembers the mask she had to wear while having radiotherapy to her head.

And they suggested that I have 15 sessions of radiotherapy on my chest and 10 on my head. So that day while I were there, once I'd agreed to have the brain done as well they did like a mask, I looked a bit like Hannibal Lector, you know when he had the mask on his face. It were the same sort of material like white with little holes all over, like an ice hockey players goalie's hat. And they used to strap you to the table you know have straps on and bolts and they'd bolt you down like that you know. And it only lasted for about probably 30 seconds at either side and they used to do that after they'd done the chest part, that were probably two minutes at either side, back and front. And it were just an awful feeling, having this thing pressing down on your face, it's for your own benefit so you don't move while it's being done; but it were fine with the radiotherapy, I didn't have a problem with it whatsoever. I used to get there for 9 o clock, have it, and we were never kept waiting very long, a few minutes that were all, and then I'd go to the hospital restaurant, have a sausage sandwich or a bacon sandwich and get into work for about 10 o clock and I were fine. 

Reiki did not help her, but others in her group benefited.

Did you ever try any of the complementary therapies that you mentioned?

I take quite a few vitamin and mineral supplements. I had a bit of, the place where we have our support group now, is part, it's in the grounds of the hospital it's not part of the hospital it's in the grounds of the hospital, and they put on different therapies, aromatherapy, Reiki, physiotherapy, all the other things where you can go. And we're lucky instead of having to pay '25-'30 a session, we can actually get that, we can have four treatments of each, whatever, they've got going on for nothing. They also have art therapy, make-up, that sort of thing.

Have you tried any of those?

I've tried the Reiki which did absolutely nothing for me whatsoever, but other people within the support group think it's absolutely marvellous. Very relaxing.

Can you explain what Reiki does?

Well it didn't do nothing for me, but it's like you have a massage, just a gentle massage, not a rough one and then there's sort of, there's music playing, very soothing music supposedly, and then they sort of run their hands. And a lot of people without touching you, you're supposed to get like the heat from the hands, I just, and a lot of people fall asleep while they're having it done, but me being so hyper it doesn't work for me. And I wouldn't have thought that any other things did like aromatherapy or, I've tried putting lavender on my pillow to make sleep because I don't sleep very well, probably three hours. I don't go to bed till about two in the morning and I'm usually wakened about five or half past.

Explains how chemotherapy badly affected her blood.

When it got after the fourth lot of chemotherapy I had another really bad reaction, well I didn't actually I felt absolutely fine but I'd been and had the last lot of chemo and then two weeks later I went, you had to go back for a blood test you know because it does really badly affect your blood. And they said that I'd no platelets, I'd no red cells, my white cells weren't performing, if I had, you know if I had a nosebleed I could probably bleed to death because it were just like water running through my veins but I felt fine. And I'd been and had another blood transfusion that day and they said "We want to bring you in, just to be on the safe side you know and give you some antibiotics." In other words they were preventing an infection starting.  

Says that palliative care and good pain control can give people additional months to live.

You said that you had a Disability Allowance, you said it's available for anybody with a terminal illness?

Anyone that's had a terminal prognosis, diagnosis, can get the Disability Living Allowance and that continues until death.

By terminal, I mean have you been given any likelihood of how many years or...?

No I wouldn't even ask, I've never asked, it's not a question that I've ever asked.

So why do you think it's terminal?

Because cancer is terminal, that's how it's diagnosed and most of the doctors that I've met would never ever say if you asked how long have I got, they wouldn't be able to tell you because they don't know. I mean some people die within a few months, other people go on for years and all they've had is radiotherapy you know.

Yes so they might be better.

That's right even palliative care, you know when they decide that they can not treat you any more because it's spread too far for the chemo or surgery to do any good, or radiotherapy to do any good, the palliative care like giving morphine can actually get people up and about again and probably give them another 12 months. You know every case is so different.

A Macmillan nurse helped her by filling in forms to get the Disability Living Allowance.

That day, but then about three days later when I had to go back to the Chest Clinic again for the actual diagnosis and I saw a proper doctor, as I like to put it, she explained what sort of type of cancer it were, which it's small cell.  And in most cases that would be inoperable, it's better with chemotherapy. And then I spent some time with a Macmillan Nurse, who actually got me Disability Living Allowance. I mention that because there's a lot of people that get cancer that don't know that they're entitled to it and it's quite a help. You know it's, I know finances are the last thing on your mind but it's enabled me not to worry too much about not working. And it's a benefit that you get whether you're working or not, it's, you know it's not taxable, so whatever you get it's all for you. And like I say, then it didn't particularly bother me, but now I find it a very helpful benefit.

Is that available for anybody?

Anybody that gets a terminal diagnosis, anybody.

And do you mind me asking how much it is?

I think it's about '52 if you don't get the Mobility with it and its '95 if you get the mobility with it as well.

Do you just have to fill in a lot of forms?

No, the Macmillan Nurse did it all for me. And I got it within a couple of months, backdated of course, you know so any, any of the health people, probably if you, because it is a big thing, they just, if they're the medical person and they know your problem they can just skip through a lot of it, whereas we'd be going through trying to fill in every single thing, so it's better probably to get somebody from, your doctor or your support group or hospital to go through and do it for you.