Interview LC20

Age at interview: 64

Age at diagnosis: 57

Brief Outline: Diagnosed with small cell lung cancer in 1995; own stem cells removed (with bone marrow), then chemotherapy, and radiotherapy to the lung, then stem cells replaced.

Background: Gold blocker (printing) (retired), married, no children.

Recalls that radiotherapy had no side effects except that it made her a bit tired.

They took the stem cells out of my blood halfway through. I had also had, halfway through, after about three lots of chemo I went and had radiotherapy every day for three weeks I think yeah.

Can you explain about that?

Yeah well that, I was a bit scared about going for that because the hospital that I went to for that was where my Dad had been (laughs) all those years earlier. So I was a little bit nervous about going but once again it's nothing, it's just, well in my case it wasn't. I'd heard different people say things that you know that if they gave you too much it burnt you and things like that, so I was a little bit wary of it. But in my case it was nothing I just laid on, you go on what they call a simulator first and they measure you all up and there's just like beams coming on to you and they finish up they put a little tattoo into you just so that they've got a reference point if they lose all the workings out I suppose. And then I just went every day and you're just on it for two minutes, you just lay on this table type thing and they measure you up and this big beam thing comes over you and you don't feel anything so 

So which part of your body exactly did they have to treat?

That was to my chest, yeah all left hand side of my chest yeah. So as I say I was very lucky with that because I never felt anything with it. You know I used to think, apart from a little bit towards the end of the three weeks, I think I was beginning to feel a little bit tired with it and I think that's one of the sort of side effects of, I suppose it possibly depends on how severe the radiotherapy is, whether they give it at different degrees or what, I just don't know, I don't really know that much about it but it certainly didn't really have any side effects for me other than a little bit of tiredness.

Describes her chemotherapy and stem cell transplant.

So what year are we in now?  

We're in 1995 so I was sort of diagnosed about middle of September and I went straight in, had all my tests and I think my treatment started about 10th October 95 and I had my first lot of chemotherapy. I was told you know that normal chemo is bad enough but when you have high dose chemotherapy you're given a single dose, the idea is to try and blast the cancer out of your body, and then you're given radiotherapy to help it out. But before that they've taken the stem cells out of your bone marrow. They take bone marrow out of your hip and it's put into deep freeze and then at the end of it all, the treatment, when they hope they've got rid of the cancer the stem cells are given back to you as a blood transfusion. In my case I think it was about nine pints I was given and then they hope that, you've no immune system then so you're sort of in a side room for about six weeks and everybody told me I smelled of cooked beetroot for some reason. And then hopefully you know your blood count starts to increase and you start to pick up and come home. 

Comments that although her chemotherapy and stem cell transplant led to remission the therapy was...

But I've been very, very lucky, I really have  As I say they always say there's someone has got to be first to be cured don't they, I mean hopefully it could be me, I mean I've now had, at the time when he told me five years it seemed an awful long time but I've now been seven years so, in remission. Which is quite unusual because the type of treatment I had didn't prove apparently to be the answer for small cell lung cancer so the treatment was, you know it didn't go ahead, you know they only did the trial. I think there was only about twenty [patients] I'm not sure, and I think three of us survived from what I understand. I mean they don't really give you a lot of, they don't really tell you things like that. But they do make quite a fuss of me when I go you know so they're very, very, very, very nice.

Was helped by reflexology and aromatherapy at her support group and describes Reiki.

Yes well I belong to this centre, this support group that meets at this centre once a month and so there they have trained therapists that come in, half a day a week and you're allowed to have five sessions of different therapies. So I've had reflexology on my feet, which was lovely, that really sends you to sleep and that's a girl that's just massaging your feet. And obviously she knows the pressure points to touch and they tell you that different parts correspond with different parts of your body. I know she used to often say to me that my stomach or my insides were a little bit uncomfortable which I do have a bowel problem anyway so I presume that that worked. 

And I've also had aromatherapy, which is sort of full body massages and back massages. And I did find once or twice that quite painful on my shoulders, I mean it was lovely, you know once she got going but they seemed to knead a little bit hard on your back and it was quite a bit painful but it was wonderful and very, very relaxing and the oils are lovely that they use.  

They do art therapy which I've not actually been to, and Reiki healing that's another one. That's where they just sort of have their hands just sort of, just raised about your body and you can sort of feel heat coming off them. And it does make you feel you know more relaxed and comfortable. 

Describes the side effects of chemotherapy that she experienced, particularly the mouth ulcers, tiredness and diarrhoea.

Well as I say I think the worst side effects are the tiredness and the fatigue and the mouth ulcers. It's so painful, there's nothing that eases the pain and it has still left me, I mean alright I'm very grateful that I'm still alive and everything you know but it does come at a price. I still do have effects, sort of side effects with my mouth, I have a dry mouth and I have problems still with my insides and that you know.  

But I think it's just the sheer tiredness and not being able to do anything and it's so frustrating because you want to get out of bed and it isn't as though you just want to lay there but you just can't do it, it's just a physical impossibility because you are so weary. I mean alright I lost my hair within the first couple of weeks but there again may be if I'd have been younger it would've bothered me more but that was never really a concern to me because I thought well you know we're trying to save my life here, if the worst comes to the worst I can wear a wig if it never grows back you know. So that was never a particular issue although I didn't like wearing wigs actually I did try and, they do supply you with them but I never found it comfy so I didn't bother, I just used to wear a turban.

But I would say the side effects, the worst one is the mouth ulcers. And of course you've no control over bodily functions, you know I mean you're going to the loo, it just pours out of you, you know diarrhoea and what have you. I can always remember on occasion, which was about the only time that I ever really felt like giving up, and someone had given me some money for the Christmas and so my husband had been and bought me a new dressing gown and slippers and I was wearing it and I just couldn't get to the loo in time and it just poured out of me. And oh it was, I was in a right state. When my husband walked in and I just, I was just sort of crying and saying "Oh this is it, I've had enough, I can't carry on like this," you know. And he was very, very calm and collected and just cleaned me up and sorted me out and I was fine again then you know. That's about the only time really that I ever felt that I couldn't carry on with it. But yes, some people do, I have heard people say that you know it is too much, that they would never, ever go through it again.  
 

She recalls the comfort and support she received from a Macmillan nurse when she was in hospital.

In fact my first experience of Macmillan was when I was at one hospital having tests before I started my treatment and as I say I think you go into shock, you know you don't believe it's happening to you. And I can remember walking down the corridor and I thought you know this isn't real, I shouldn't be here, I should be at work. And I just leant over a balcony and I started crying and this lady came up to me and put her arms round me and started talking and comforting me and she was my first meeting with a Macmillan nurse.  

And she was really wonderful you know, I've only met her once since and that was at a, a speech that I had to do for Macmillan and she happened to be there and it was her birthday, it was five years afterwards and it was really wonderful seeing her again. But those are the people that you need around you, you know when you're going through something like this, they're absolutely brilliant yeah they can't do enough for you.

She enjoys her support group and says people's partners can go too.

But this is why I think the support groups are very good as well, the lung cancer support group that I'm a member of. Until I went there I'd never met anyone with lung cancer before, to my knowledge anyway, and it was lovely you know we just meet once a month and it's lovely going. And we just have a right good laugh. You know I mean sometimes some of us aren't feeling too good and we all cheer each other a little bit and we have different speakers come and talk about different things you know and what have you, but it's nice. You know we do have people say "Oh a load of people with lung cancer sat round a table, how horrible," but it isn't like that at all, we all have quite a good laugh. And our husbands and partners go you know and we have a cup of tea and a biscuit and a chat and everything and it's really good. I quite enjoy going there, it's lovely, and it's a right good centre.