Interview 34

Age at interview: 61

Age at diagnosis: 60

Brief Outline: Follicular non-Hodgkin's lymphoma was diagnosed in 2005 after she took action on a lump she had had for many years. She has not been treated but is being monitored.

Background: Retired manager in further education, widowed with three adult children. Ethnic background: White British.

More about me...

She had had a lump on her neck for many years, which her GP had said was nothing to worry about. However, the lump was getting bigger and she was becoming self-conscious about it. In the space of one week she saw a poster indicating that lumps on the neck could be cancer, and someone she knew was diagnosed with non-Hodgkin's lymphoma. These events spurred her on to do something about her lump so she went to see a different GP. The GP suspected a problem and referred her to the hospital. She was seen by several specialists and it was decided that her lump should be removed and a CT scan done. The pathology report on the lump showed that she had follicular non-Hodgkin's lymphoma.

Radiotherapy or chemotherapy were initially suggested but it was the decision of an interdisciplinary team that her lymphoma should just be monitored for the time being. So she attends consultations every 6 - 8 weeks where her blood is tested, her weight checked, her glands felt, and questions asked about her general health. She has not yet had any treatment but may do so in future if her lymphoma becomes more active.
 

Explains what prompted her to do something about a lump she'd had on her neck for years.

I'd had a lump on the side of my neck for some time, some years I would say, and I had mentioned it to the GP who'd said it was nothing to worry about. But I noticed, it was getting bigger and I was aware of the fact that other people could see it. And in the course of one week I was somewhere where I saw a poster which said, 'I had a lump on the side of my neck and it was cancer but it was treated.' And two days later I heard of somebody who had, someone I knew who'd been diagnosed with non-Hodgkin's. And I thought, 'I'd better do something about this lump'. 

So I went to another GP in the practice and realised immediately that I was in trouble. Her reaction was so marked that I think I knew right from that moment that there was something really wrong. And she arranged for me to see a haematologist within a couple of days. I had a phone call suggesting that I might go through early in the morning and he would see me before he saw his ward rounds. 

Sometimes worries about her illness but reassures herself that it is being dealt with; having...

But it does seem very odd, on reflection, you wake up in the middle of the night and think, 'I've got cancer and nobody is doing anything about it'. And then you have to think, 'No that's not so'. I see the consultant every six to eight weeks, they take bloods, they check my weight and they ask me very obvious questions, and he feels my lymph glands. He left one of the small ones in my neck to act as a kind of weather gauge for something happening. And fourteen / fifteen months further on I'm just as fit as I was on that first day that I turned up. 

But I've had a bit of adjusting to do in my own mind and I can understand that for some people this would be a very difficult one. Curiously because I'm widowed I actually think it's easier for me, I don't have anybody else to worry about. I only have myself to think about and I think I've adjusted fairly well to thinking, 'Well this is the situation'. But I've had fifteen months of excellent quality of life, I would say that my quality of life has really not deteriorated in any way, now I've got a bit of confidence back. Looking back, my first reaction was to kind of freeze, to stop doing things, or to think that I was going to stop doing things that I was involved in before, and certainly not to take on anything new. But that didn't last very long and after three or four months I thought, 'This is no way to live'. I was recently retired and I was at the point where I'd thought I was going to be putting different things in place that I would enjoy doing and I've just gone ahead and done that, I've undertaken new interests and new activities and so that stopped getting in the way. 

Her low grade lymphoma did not need treating yet but would be monitored; she could however have...

I could not speak highly enough about the professionalism and the courtesy that was demonstrated to me. 

So at the first appointment, the first time around he spoke to me about radiotherapy because he did not have the full report from the radiologist at that point. At the second appointment he said it would be chemotherapy because it was at a more advanced stage than he had expected. But he wanted to take my case to the interdisciplinary team, that I think is commonplace in hospital settings. So the third appointment he said that he had discussed my case and his colleagues to a person thought that he should just watch the situation rather than do anything immediately, because I am, to all intents and purposes, I am perfectly well and I was perfectly well. I go to the gym regularly, I do not suffer minor ailments, I think of myself as a fit person, I just was a fit person who had a lump which I'd had for a long, long time, he tells me maybe as long as twenty years. Had I not had that lump I would not have known there was anything wrong with me at all. 

So he said at that stage, 'That's my colleagues', that was the general decision that that's the way we should take it and I will go with that if that's what you want, but if you want chemotherapy now I will give you chemotherapy.' It was fortunate that at that point I had the daughter with me who is a geneticist by training and when we came out she said, 'It's a no brainer mum, that was the considered decision of a range of people, a range of skills, and that's what you should go with.' 

A woman who didn't need treatment immediately and was continuing her normal life said her friends...

And one of the most difficult things about this one was actually telling people, because I didn't look ill, I wasn't having any treatment. I obviously had to tell the family, including my mother who's very elderly. But then who did I tell and who did I not tell? I didn't want friends to hear from other people because it sounded as though I was choosing to tell some people and not tell others. But it's a bit of a conversation stopper to say, 'Well there's something you should know, I've got a diagnosis here that is not very happy.' But having told people then I think it's very difficult for them. They see me going around perfectly normally and it takes a bit of adjusting to. And because we've come to terms with it as a family we can now laugh a bit about it.