Interview LC14

Age at interview: 53

Age at diagnosis: 52

Brief Outline: Diagnosed with small cell lung cancer in 2001, treated with chemotherapy, followed by radiotherapy to the head to prevent spread to the brain.

Background: Sales assistant (retired), married, 3 children.

Recalls her fear when the mask was made for radiotherapy to her head without explanation and...

Me and my husband had an appointment to go to be measured up, it wasn't, I wasn't explained to what they were gonna do to me. Anyway they took us into this room. They put like a swimming cap just on my, the back of my head. Told me to lie down and he said 'You'll, this will feel warm on your face.'  And, he put it on my face and then it was like I was being buried alive, I mean I don't know what they, I mean all I know that they were doing was what my husband told me. They put like this green gunge on my face and then plaster of Paris, like strips of plaster of Paris over my face,  that was to make the mould.  But I couldn't see, I'd just got that part to breathe through. But my, my husband said he could see my heart going like that, that's how frightened I was and because, I mean you've probably had, plaster of Paris and they press it and I felt as though I was being buried alive, it was really horrible.

Did they explain?

No they didn't tell me beforehand.  Anyway they sort of once it, he said 'This will take about two minutes to set,' it seemed like two hours!  Anyway they eventually pulled it off and I just sat up and I just burst out crying, it was the most horrific thing I've ever been through.  I think that was the worst of all I went through, it really was horrific. And I says 'Why didn't you tell me what you were gonna do?' And they said 'We find it's better if we don't tell people,' and I couldn't understand that because if, I mean I could have had a bad heart or anything like that you know. And I mean my husband, he said my chest was going up and down like that. You see with children they tend to put children out while they do the mask. But anyway I did complain to, to a nurse in the hospital but I never got anywhere.  

I'm so sorry.  What an awful experience.

It was. But, and this was the result of it. When they, when they gave it to me there wasn't any holes there and I made them cut the holes out because I, I said I need to see what you're doing to me. But what happened was - it's fitted tight on your face there [shows mask] and you, it was actually clamped down and because the rays had to keep the, exit at the right spot, but that was clamped down tight on my face and I couldn't move and it was really frightening. And I had to have that done eight times.

Describes her chemotherapy and the excellent care she received.

So can you tell us about the chemo now?

Right, I used to go on Friday every three weeks and it was a whole day session there, get there for nine o'clock and they'd make sure your blood was all right, you were strong enough to take the chemo. They would order it from the pharmacy, it might take an hour to come over but you know there was all other patients in the room and I made some wonderful friends, two ladies who was there with me.

And they just put the injection in your arm, they was so gentle. And it took about, you know it was a whole day. I had, as I say I had two different chemo's and then you had to have the flush so sometimes it was six o'clock on the night before I'd get home. But I mean the nurse, they waited on you hand and foot - they brought you your dinner, cups of coffee every hour like you know because you have to, you have to go to the toilet a lot. But they just waited on you hand and foot, they were really marvellous.

So you had a drip in your arm?

Yeah.

Did you walk around with it?

Yes, yeah I used to go to the toilet yeah and everything yeah. Couldn't go far like you know because it was up the stairs! But yeah and I mean I sailed through the chemo, didn't have no problems, no sickness, they gave me all the right medication to come home with.

How many cycles of chemotherapy did you have?

I had six. Six session of chemo, every three weeks, yes.

Describes the severe side effects she suffered after she had radiotherapy to her chest and head...

Can you explain what sort of side effects you did develop and how soon they took to come?

Right, I lost my hair again which I wasn't told. My hair had just started growing back again. And I did ask the doctor at the radiotherapy, the consultant and I says, 'Will I lose my hair again?' He says, 'No it'll just stunt the growth.' I lost all my hair again.      

I lost, I couldn't eat when I, I finished on the last day of the year December 31st, I couldn't eat my Christmas dinner, I couldn't, well I never ate literally for two months. I lost two stone in weight. The pain, all the medicine they gave me didn't work. I ended up getting my own GP out because I was throwing all this black bile up. And I went and stayed in the hospital where I had my chemo done for four days. They found the right medication and within a week I was as right as rain.

It's not a nice way to lose the weight is it?

No, it was, it was a rough two months. And another thing I couldn't do, I couldn't lie down to sleep. I slept in a chair upright for two months with just a quilt over me because if I'd laid down that's when you know, because it was, if I burped or if I drank anything it was really painful, really painful, because it takes all the lining off you, the radiotherapy takes all the lining off your oesophagus.

So if you laid down?

Oh it was... 

Fluid came from your stomach?

Yeah and you get a lot of acid and things like that you see.

Oh, how awful to have to sleep in a chair for two months.

I did quite well actually, it was quite, it was quite comfortable to sleep in. And that's it I, the first hospital got me right again and it was just up and up from then you know, I didn't look back.

Recalls that during chemotherapy she developed thrush.

How many cycles of chemotherapy did you have?

I had six. Six session of chemo, every three weeks yes.

Did you have any side effects with the chemo?

I had one, once I think it was the fourth session and I got what they call thrush. Uh, its just all white in your mouth and it you know, you just, you lose all your taste-buds and everything but they gave me the right medication and within four days it was gone and that's the only thing I suffered from. I didn't have no sickness, obviously my hair fell out. I got very tired towards the end of the first week which, but I knew all this because they'd explained to me right from the beginning I knew exactly what was happening to me so I wasn't frightened, you know there was no need to be frightened or anything like that.

What were your feelings when your hair fell out?

It didn't really bother me because I thought it was a small price to pay. You know, if this was going to save me so no it didn't bother me.

Describes the support she received from her lung cancer specialist nurse and the nurses who ran...

Right when I found out I was going have the chemo there was, well when I got the results of knowing I was going have chemo, there was a lung cancer specialist nurse there with me. And then she took me down to the ward, to the chemo nurses and I think I must have been in a good two hours and they talked me through everything, you know even chatted to me about my family and the children like you know. And they were so compassionate, they were really wonderful. And, that made it a lot easier knowing that I'd got to go there on the Friday because this was the Tuesday. They told me what, what drug I was having, the two different drugs and how it worked and they just went through everything, really nice girls, really nice.

Tells others to look for the best treatment, to ask questions, and to search for information.

Do you have a message for other people?

Yes one, one person in a meeting said, 'Don't get sad, get mad'. So if there's anything that you need to know there are lots of really good books out there. Don't be frightened to ask questions, and just make sure that you get the best treatment, because I think anybody with lung cancer needs the best treatment, they deserve it.

And is there anything else you'd like to add?

I'd like to say that we need more government funding, we need more nurse cancer specialists, and we need more surgeons for this disease because there's not enough, considering 40,000 people are dying every year we just haven't got enough nurses or surgeons to cover.