Interview 26

Age at interview: 54

Age at diagnosis: 54

Brief Outline: Diagnosed with non-Hodgkin's lymphoma in 2005 after an abdominal growth caused her discomfort. Other symptoms included a cyst on her neck and hot flushes. Treated with chemotherapy and rituximab. In remission.

Background: Housewife, married with five adult stepchildren. Ethnic background: White Caucasian and Slav.

More about me...

A cyst appeared on her neck which, at the time, she attributed to stress. Eventually it was biopsied by which time it had nearly gone and nothing cancerous was found. One year later she experienced tummy ache which a locum GP attributed to indigestion. The second time she consulted, her GP sent her for an ultrasound scan which revealed a growth in her abdomen close to her pancreas. 

The specialist suspected either pancreatic cancer or lymphoma and sent her for blood tests and a CT scan, which confirmed it was not pancreatic cancer. To confirm his suspicions of lymphoma she was sent for a biopsy. She had not heard of lymphoma and when told it was treatable with chemotherapy did not initially realise it was cancer. While waiting for the pathology results she developed a bad chest infection. Eventually it was confirmed that she had follicular non-Hodgkin's lymphoma.

She was also experiencing hot flushes around the same time as her investigations, which she attributed to the menopause. She was given eight treatments of RVP chemotherapy with rituximab, which stopped the hot flushes and put her into remission.
 

Originally suspected of having pancreatic cancer, she was relieved when told she actually had...

And he was as good as his word, the following, that Friday I did go and see him, and he saw the scan that I'd had from the hospital locally and he told me it could be pancreatic cancer but he didn't think it was terribly likely because I wasn't feeling that ill. It could be pancreatitis, it could be this, it could be that, it could be a thing called a lymphoma, which I'd never heard of. And he said, 'You immediately will have blood tests and next week you will have a scan just as soon as it's possible for you to have a scan, because if it is pancreatic cancer it's very, very, very serious.' And I was saying very flippantly, 'Well I won't lose sleep over it.' And honest to God I didn't lose any sleep over it, I just could not believe that anything could be so seriously wrong with me. 

And so that was that. And the next week I went and had a CT scan. I mean I'm finding the whole process just enormously interesting. And the day after the CT scan was Good Friday, it was a very early Easter so it was still in March, and my pancreatic specialist was kind enough to ring me up, even though it was Good Friday, and he said, 'You haven't got cancer.' And actually he probably said, 'You haven't got pancreatic cancer, isn't that good news?' And so I thought, 'Oh yippee I haven't got cancer'. He said, 'I think you've got a lymphoma, and to make absolutely sure of that and to determine exactly how it should be treated your next step is to have a biopsy. You'll go into such and such hospital for that and my secretary will make the arrangements and she'll come back to you.' 

And I said, 'How is this thing to be treated?' And he said, 'It's treated with chemotherapy.' And I thought, 'How funny, so chemotherapy treats things which aren't even cancers but just growths which aren't particularly malignant'. And I said, 'Oh chemotherapy, I've heard that's really not a very nice treatment at all.' And he said 'No it's not very nice.' I said, 'Oh well I dare say I'll cope with it when I come to it.'

Could be given rituximab as first line treatment before it was generally available because she...

So the chemotherapy you had, that was rituximab wasn't it?

Yeah well the rituximab, that's the monoclonal antibody, it's not the chemotherapy. I had rituximab plus the RVP I think it's called, I'm not very good on acronyms. The thing is it isn't CHOP. And I felt enormously privileged to get rituximab. I know very well it's one of those drugs, one of the twenty-two cancerous drugs I read about last summer which are sloshing around in the bowels of the ineptly named NICE, the National Institute of Clinical Excellent. So yes, I think at my hospital they're very, very, very, very smart and I think they, maybe they managed to wangle, I get the impression that an awful lot of people were getting rituximab who are on the National Health, and I thought, 'Fantastic'. 

I felt rather ashamed to be having something that not everyone could have and I felt, I've always felt, my husband is rich, he's self-made, I'm enormously proud of him, he started life in a two-up-two-down, he's got this socking great house, I think he's amazing, it's never gone to his head. And I've never taken it for granted that we do have lots of money and I'm in this incredibly and blessed position and it's got responsibility, and why me? Why should I be so lucky? I've had the rituximab, I've had the private healthcare and all of that. But since I do have these good things I do appreciate them, I feel a bit apologetic for it sometimes, often, always, really. I can't say I don't love it because I do love it, I'd be mad not to.

Was very upset when her much wanted first treatment was delayed, and at her second treatment when...

So I had that and then I went in for my chemotherapy. And the first real bad thing was that my consultant hadn't signed the consent form or hadn't had me sign it, some form that he and I hadn't signed, and he wasn't in that day and they had to find another tame doctor who would do it and they couldn't find it and it was all sixes and sevens. I was hanging around waiting for this much wanted treatment to start and I couldn't have it because I hadn't had this form and I was going crazy. I've always been funny about time and punctuality and I kept sort of going upstairs saying, 'But please, I'll go and find a doctor, just tell me what to do. Can't I just find someone somewhere?' 'No, no, no it doesn't work like that, I'm sorry, I'm sorry.' And I was winding them up and it was terrible behaviour, I was quite ashamed of it. That was nothing to the second treatment. 

The day ward was at sixes and sevens, they had so many patients, it was the most chaotic day I'd ever, I ever was to witness there. And they so fixed the drip that every time I moved it came undone and it bleeped, it had a slight fault in it. I went absolutely bananas. I don't mean that I had hysterics, and I didn't behave so badly as to try and put myself in front of other patients, and there's some terribly sad patients, there was a poor old bloke who he was clearly dying and he was incontinent and he was behind a screen and you could hear him and it was so pitiful. And at the same time I was in a complete panic and I was ashamed of myself because this old man was there and there were lots and lots of other patients. 

But every time the drip went beep, beep, beep I sort of leapt up like a hysteric and strode over to the nurse, 'It's doing it again, it's doing it again, it's holding me up, oh help, help, help.' I just could not, I just couldn't get a grip, I was terribly, terribly ashamed of myself and I remember two of the cancer nurses looking at me and saying,' Look, have you got a train to catch?' And I took them seriously so help me, I said, 'No I'm not allowed to catch trains but no, no I can't be,' 'You haven't got a plane to catch?' 'No, no I'm not allowed to fly at the moment but I've got to meet my husband and I'm letting him down and oh, oh help.' And I just felt helpless and I rang him up and he said, 'Look it's not your fault, don't worry, just don't worry.' And he really was calming me down and they were all trying to calm me down, I was just, I was a disgrace. It's just so mortifying thinking about that.