Interview 37

Age at interview: 48

Age at diagnosis: 43

Brief Outline:

She was diagnosed with a gastric non-Hodgkin's lymphoma in 2001 after experiencing rapid weight loss and a bout of vomiting. A course of chemotherapy put her into remission.

Background:

Houseperson, separated with two adult children. Ethnic background: White British.

More about me...

She was dieting but lost weight more rapidly than she expected. Then she vomited and her tummy was tender. She went to see her GP who examined her and recommended she have an endoscopy. She was admitted to hospital and the endoscopy showed she had a stomach ulcer that was bleeding. They took some samples from the ulcer to culture and test in the laboratory and began treating her with antibiotics. They didn't think anything was seriously wrong but several weeks later she received a letter notifying her of an appointment with the endoscopist. When she went she was told that the tests had revealed that her stomach ulcer was actually a high grade non-Hodgkin's lymphoma that had burst open.

She was treated with six sessions of intravenous chemotherapy, one every three weeks. Her arm swelled up in reaction to the first dose so they had to slow down the drug delivery and wrap her arm up to counter any swelling. After the fourth dose another endoscopy showed that the tumour had completely gone but she was still given the last two treatments just to be sure. Her bone marrow had been tested and shown to be affected before treatment started, and this also was clear of lymphoma after the fourth treatment. After the sixth treatment she was officially told she was in remission, and that was five years ago.

She has recently been experiencing bouts of diarrhoea, which is unusual for her, and a tender tummy. She is going to have a CT scan to investigate these symptoms. She also suffers from rheumatoid arthritis, which may be related to her lymphoma, and osteoporosis.
 

When told her diagnosis she felt 'trapped behind a brick wall' unable to find a way through and was anxious to get home to explain it to her family.

And anyway I was the last one in the clinic and I went in to see the chap and, ever such a nice chap, and he just sat me down and he just says, 'Right we've got your results,' and he said, 'We've got some bad news but we've also got some good news for you'. So I said, 'Oh alright then so what's the bad news?' And he says, 'You have non-Hodgkin's Lymphoma'. And I said, 'Right,' and I said I didn't really understand it. He says, 'But in your case', he says, 'Because it's in your stomach you've gastric lymphoma'. So all I thought were' 'Lymphoma, lymphoma' cancer'. So the first thing I says to him was, I were just stunned more than anything, and I just said to him, 'Do you mean to tell me I've got cancer?' And he says, 'I'm really sorry but yes you have'. And I said, 'Right'. And he said, 'It's in your stomach'. And I said, 'Right'. 

And I just didn't know what had happened, it were just as if somebody had put a brick wall right in front of me and I were looking for a door to get out and I couldn't get out, and I were just, I didn't panic but it were just like I couldn't go any further in front of myself and all I could think about were' 'What am I going to say?' I had a son at home and I had my husband at home and all I were worried about were' 'What am I going to say to 'em, how am I going to tell them that I've got cancer?' Because we'd lost my mum and things weren't good, and my friend had it, my dad's partner had it, my sister had it, and I just thought, 'What do I do?' you know, 'My poor dad, two of his daughters'. 

So all I wanted to do were get home, and I said, 'No,' I said, 'I need to get home'. They said, 'No you can't go home straight away, have a cup of tea, you need to be calmed down'. And I said, 'Well I'm OK', I said, 'I'm fine,' I said, 'But I really do need to get home because I have to explain this one to my husband'. And the nurses, the doctor just said, 'Can you take her outside and make her a cup of tea and everything.' 
 

Lost all her body hair except the eyebrows; she cut short the hair on her head before it came out and then wore a soft baseball cap.

And I'd have that for about twenty minutes and then that were it and she says, 'Oh the next time you come your hair will have probably come out'. And I said, 'Oh so it's definitely going to come out then?' And she said, 'Oh yes.' Because of part of the chemo that I had, I did actually lose all my hair. That were a little bit painful as regards that it burns the follicles in your head and it just, because I didn't have long hair it was easier. And what we eventually did were we shaved my head down so that it was short and then I got in the shower and I just let the hot water onto my head and rubbed my head and it actually rubbed my hair away and it actually' But once it had come out I felt so much at ease with it because it had actually all come out and the pain had gone then, you know, there were no sensation on my head. 

I lost all my hair, my arm hair, all my pubic hair, everything just went totally. My eyebrows were about the only thing, they went really, really thin but they didn't quite disappear. But my eyelashes, the hairs up my nose, everything just went. And it were a bit funny really when you looked in the mirror because your head were just, it were like it were glowing, it were white with not having any hair and, you know, you'd got no eyelashes and you just looked very blank. I used to have a few problems with my nose, they gave me some nose cream, because obviously the hairs up your nose, you know, they protect you don't they, and you don't realise how much they do protect you till you don't have any. The same with the hairs on your arms and your legs and things, you know, I used to have right hairy toes and I still haven't got them, I haven't got hairy arms any more. I've just grown hair on my arms, under my arms. 

And she were right because within the three weeks that I went back for the second treatment I had no hair. And I started wearing, I didn't like the turbans, I used to wear the baseball cap and I had a lovely soft baseball cap and I still have it now because it's a little treasure to me and I've always kept it, and I used to wear that because it were lovely and soft. 
 

Chemotherapy gave her mouth ulcers and she lost her senses of taste and smell; food tasted bland so she wanted to eat tasty food but spicy dishes made her mouth more sore.

I do remember while I was on the chemo I lost all sense of smell and I lost all my taste, and everything I ate tasted like cardboard, it was just horrible. I'm trying to think what did I used to eat that I could taste? Things that were just really tasty I had to eat because all my taste buds had gone. I just remember that everything just tasted really bland and horrible so I used to go for the, I had to be careful with curry because curry used to, it was so sensitive in my mouth, you're to be careful with spicy food and stuff like that, but stuff that was really tasty I used to go for. I used to eat a lot of ice lollies and all because it just used to cool my mouth down, because it tended to burn my mouth I used to get mouth ulcers and they used to give me the Cocyl mouth wash for my mouth. That were the only thing, these are just the side effects of the chemotherapy. It just affected my nose and my mouth, my throat a little bit. 
 

Was upset to find her hair on the pillow on waking; felt that losing her hair made her look blank and took away part of her identity.

I think the worst part about it were when I were asleep and I woke up and my head was tingling and I'd got up and there were just hair on [the] pillow. And that made me feel a bit sick because I just thought, 'Oh it's happening', and it just happened, within a week of me having my first session of chemo, it just started coming out. And it were a bit upsetting were that because I mean to lose all your hair like that. I mean I hadn't had long hair but I just, it were, how can I explain it? It takes a big part of you away does your hair, you don't realise until you've got no hair just how precious it is to you really. Because it's your character is your hair, without it you're just a blank piece of paper, you're just, and you do, you look so blank with no hair. 
 

She knew the treatment was making her better and was cheerful about it; though she was uncertain about what would happen next she knew she would deal with it.

I mean I used to go in and there were some poorly people about but I didn't seem to be poorly, and people would look at me and they'd think, 'Well what's she here for?' But it were only when I turned round you realised I'd no hair because my baseball cap didn't cover that bit. But I were really cheerful and everything, I just, I enjoyed, I'm not saying I enjoyed the chemotherapy, but I knew that whatever they were giving me were making me better. And I think that's a lot of what kept me going, definitely kept me going. 

You've got to be so positive about what you want, the way you want to do it and you just do it, you go for it, and it really does help. I think if you panic and start thinking, 'Oh this is going to happen, that's going to happen', you'll be poorly. You've really got to think, 'Right, I'm having this done, I'm going to go in, both barrels, take the lot and deal with it'. And I know it sounds harsh but in reality that's what you've got to do, you've really got to just think to yourself, 'Go for it', whatever they can give you to help you, take it, accept it and deal with it. And I did, and I really did. I mean I didn't know what really to expect. You get all the information and you take as much as you can in on board. But when you're actually having the treatment you've still got that niggly feeling of, 'Right, well I wonder what's going to happen next?' But then again you've got to think to yourself, 'Well whatever happens next I'm going to deal with it, no matter how hard it is I will deal with it'. And that just takes you through that little mile longer, you know, you get that extra mile thinking that way, that no matter what you're going to fight it, you've got to have that on board I think, definitely.
 

All her friends cried on hearing the news, which made her cry too; she didn't like being treated as if she needed wrapping in cotton wool.

My friends, that were hard work were that, because having to tell them what was matter, that got to me more than anything because they all broke down, everybody you told, it were like, 'Oh no'. And they'd all be in tears and I'm saying, 'Don't cry because if you cry you'll set me off'. And they did. I mean I laugh at it now because I think we'd a lot of tears, we'd had a lot of tears, and it weren't tears because of what were wrong with me, it was tears for them because they were just so upset. People don't know how to approach you. People know that you've got cancer, treat you like you're an egg shell, they wrap you up in cotton wool, and you're saying, 'But don't treat me like this, I'm no different to you, apart from the fact that, you know. I'm not delicate or 'owt, I've just got no hair, and I've got this and I'm having treatment.' 

It were, one of my friends she just would never stop crying, so I just says, 'I'm not going to talk to you no more, stop crying else I'm not talking to you'. All she, 'I'm sorry, I'm sorry' that's all she could say. But that were hard work.
 

Her sons were frightened and stayed away from home just when she wanted them around her, but things improved once they saw she was getting better.

How did your kids react?

Well, as I said, my youngest lad, he's still at home, I think he were doing his A levels, and he had a load of tears and then he says, 'I'll have to go out mum'. And I said, 'Oh yeah you go out darling'. And he went out and he went over to a friend's house and he stayed at her house, and he just said he couldn't cope with being at home, he said, because his dad were upset and everything. And my eldest son he's in the Army and the worst part about that was that I had to phone him and tell him, and he actually got compassionate leave. But the daft thing about it were he come home and I saw him once and he just, he come home for a week and he disappeared because he couldn't come. It was like, in a way I felt like I'd got sommat [something] seriously that I were going to give to somebody, because nobody come near me and I felt a little bit, not alone, well yes slightly alone I suppose, because I wanted my kids near to me, and my kids couldn't be near to me because they were frightened of it. 

I suppose I didn't understand it and I suppose also that they didn't want to see their mum not well, because they knew what were going to happen. Because I explained everything to them. I explained about the hair loss, what would happen about the sickness, things that could happen and what had to be done with it all. And I didn't see any of them. And I just thought, 'Well my son's come up, he's got compassionate leave, it would be nice to see him', and I've seen him once and that were it. And then I saw him the day he went back and I just said, 'Well where have you been?' He said, 'I couldn't stay here mum', he said, 'I couldn't, I'm sorry but I couldn't stay'. So I said, 'Well you're better off back down, get back into army'. 

So he went and but I kept in contact on the phone then and he were fine. And my youngest one came round, he was OK. And I think once they saw that I was getting better with the treatment and stuff, it brought everybody round then, they all started to understand it and yeah, I think they managed it then. Because I mean it's got to be traumatic for them, I mean even so they were young, even then they were young.